Update! Seen my GP again. B12 272 folate 8.8

Good morning,

More advise please?

(Please see my last post for full history)

Saw my GP this morning and took Mum with me for support, which was needed and greatly appreciated.

I asked the GP if we could discuss restarting my B12 injections as although my B12 levels were 'within range' at 272 I was symptomatic with fatigue, shortness of breath on exertion, no energy, twitching in muscles and pins and needles in my hands and feet, to name a few main symptoms, there's many more. I explained to the GP about my B12 deficiency last year and how my injections were stopped after the loading dose injections due to my levels being normal again. I explained my b12 levels had been dropping since and my symptoms were gradually getting worse over time.

He asked about having the intrinsic factor test and I said yes which came back normal and he said then it's not an absorption problem. I explained my diet was good and not vegan or vegetarian and that this test is not always correct.

He went on to say that the guidelines have changed recently and he can only prescribed b12 injections for someone with low levels and pernicious anaemia. I understand the guidelines are for review but I was not aware that this was the case and after reviewing many links to healthcare websites I was under the understanding that the clinical picture is the most important factor in assessing a deficiency as there was no gold standard to define deficiency and treatment should not be delayed to avoid neurological impairment. I told him this and he asked me where this information is from and I said the British society of haematology. Is he correct in his information about guidelines changed already?

He went on to prescribe me oral cyanocobalamin 50mcg 3 times a day and 5 mg folic acid once a day and refused my request for injections saying the guideline is to try oral medication first.

I wrote a letter to my GP which I gave to him during the appointment which outlined my symptoms, the physical and emotional effect my symptoms have on me and my requests. He said he would read my letter, double check the guidelines and get back to me by the end of the week. Shall I take the medication or wait? I don't see how they will help as I have been taking a multi vitamin for past 10 months and levels are still dropping.

I asked to be referred to haematology and use my private healthcare work have provided me and he did not acknowledge this statement and explained how it was not related to money issues as to why he would not give me the injections and said 'it does not come out of my wages'.

I asked to be signed off work till the end of the week till he does his research and he signed me off for two weeks!!

My mum had to interject at times and say how badly I'm coping and she finds it unbelievable that with my symptoms he was just going to let me go off home whilst he researches his guidelines.

Sorry it's long but any advice would be greatly appreciated.

Thank you

Jennie

15 Replies

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  • Guidelines for the diagnosis and treatment of cobalamin and folate disorders

    Authors

    Vinod Devalia,

    Malcolm S. Hamilton,

    Anne M. Molloy,

    and on behalf of the British Committee for Standards in Haematology

    First published: 18 June 2014Full publication history

    DOI: 10.1111/bjh.12959 View/save citation

    Cited by (CrossRef): 30 articles Check for updates Citation tools

    Funding Information

    Summary of key recommendations

    The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status because there is no ‘gold standard’ test to define deficiency.

    Serum cobalamin currently remains the first-line test, with additional second-line plasma methylmalonic acid to help clarify uncertainties of underlying biochemical/functional deficiencies. Serum holotranscobalamin has the potential as a first-line test, but an indeterminate ‘grey area’ may still exist. Plasma homocysteine may be helpful as a second-line test, but is less specific than methylmalonic acid. The availability of these second-line tests is currently limited.

    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.

    Treatment of cobalamin deficiency is recommended in line with the British National Formulary. Oral therapy may be suitable and acceptable provided appropriate doses are taken and compliance is not an issue.

    Serum folate offers equivalent diagnostic capability to red cell folate and is the first-line test of choice to assess folate status.

  • This is what i quoted to the GP and he just kept saying the guidelines have changed and where did i see this information. I advised the British society of haematology. Thank you for your post im guessing these are still the current guidelines?

    Jennie x

  • All I can say is that the N.I.,C.E. Guidelines are scheduled to be "overhauled" according to Mr Martyn Hooper (M.B.E) chair of The Pernicious Anaemia Society as he has been invited to discuss their "clarification".

    pernicious-anaemia-society....

  • Thank you. Thats the position i thought it was at at the moment.

    Jen x

  • I'm so sorry you are having such problems with getting your GPs help and understanding. He should be listening to your symptoms and taking into consideration your history of B12 deficiency. He cant say it isn't PA by one intrinsic factor test, its widely known that it only shows a positive result 50% of the time, Ive read some members are tested a few times before it shows. I struggled to get it tested just the once, but like you showed negative. Why on earth did he give you a loading dose and not follow it up with injections??? I haven't read your last post, but will do next...

    My level was also at 260 mark and like you I felt extrememely unwell and had been for many years under the diagnosis of ME, but was told it wasn't b12 causing the symptoms. I did an Active b12 and MMA test with ST Thomas hosp (postal test) in the end, and Active b12 was at very bottom of range and MMA very high over range and they diagnosed a functional b12 deficiency, so just shows how irrelevant the serum test of 260 was, it would have needed to be under 130 for my Dr to have believed it be a problem, so he really should be listening to symptoms. I'm not sure how long you'd need to be supplement free to take an MMA test, but it could be worth contacting St Thomas. You might like to take a look at their website Viapath.

    In many countries they treat once the level is under 500 as neurological symptoms can occur then, so why our Drs cannot see results in the 200s with accompany symptoms as a strong indicator, no-one knows!

    How low were your levels before when you were given injections? Were your red blood cells enlarged?

    Sorry cant add much more today, injection due tomorrow! Hope your Dr soon gives you what you need! Take care...

  • Thank you so much this gives me great comfort and thank you for the effort it took to read and reply. I can not get these blogs any shorter ha.

    The first blog i posted has all the previous details and figures, would be great if you could read it but would not expect you to as it is also a long one ha and day before your injection.

    To answer your questions last june i was 136 b12 level, had 6 loading dose injections over two weeks with folic acid for a month, when they tested my b12 again after 4 weeks of the injections my levels were normal so they stopped all treatment. At the time last year in June my red blood cells were enlarged.

    I also had iron deficiency anaemia in 2009 but not had it since.

    Im pleased to hear you have the diagnosis and treatment now. I live in outer London so St Thomas is accessible so thank you for that advice too.

    Jennie x

  • Hi

    So sorry for the long delay, the injection made me extra tired, then went down with a virus of some sorts, grrr :) Not good to have waste the first week after an injection!

    I hope you've been getting some sense out of your appointments since we last spoke. I think they must be mad with so much evidence in front of them to try to blame it on cfs.

    I was diagnosed with cfs/ME 18 years ago and have ever since had spells of improvement, but never fully and very lengthy times of being very unwell with just a half hour of activity taking weeks to recover from. During that time I've spent a lot of money on nutritionists (wondering now if that's why I saw improvements when on very high strength supplements, just didn't know at the time what was actually benefitting out of them all!) and private Drs too. I've been really unwell for the last 6 years, without the usual improvements or so and discovered a functional b12 deficiency last year through private testing with the help and support of the lovely people on here.

    I have no idea if b12 has been the underlying problem from day 1 or if it has developed since and is accompanying the cfs but I know that the symptoms I experience are all on the b12 deficiency symptoms. I only wish I'd known more about it all those years ago and would urge you to keep fighting for your b12 injections. Its appalling they have all the evidence and I appreciate that you should get all avenues checked out, obviously am not saying you don't have chronic fatigue problems, but they have a pretty good starting point in treating your b12 and assessing your wellness after a much longer period of time. Of course your levels would be sky high after injections and the fact you were feeling better should count shouldn't it?!

    As others have rec, I'd join and contact the PA Society for more information and support. I have experienced knowledge about this condition is very patchy at my Practise and there seems to be an underlying fear of overdosing with b12 with them, rather than concern at what could happen if we remain undertreated

    Please let me know how you're getting on and ask anything on here or private message, I know how difficult it can be getting this sorted when you feel so rotten.

    Take care jo x

  • Some of the guidelines - particularly the NICE are rather badly worded so easy to come to the conclusion that PA is the only absorption problem and if it doesn't come back positive that means no absorption problem but this is wrong on two counts - PA isn't the only absorption problem and the IFA comes back negative that's a long way from ruling out PA.

    Local authorities do sometimes have their own guidelines and these can be very outdated but I am not aware of any new guidelines saying that if IFA comes back negative people should not be treated with injections - quite the opposite.

    If your GP doesn't budge then I really suggest that you join the PAS (if not already a member) and contact them. They may be able to write to your GP pointing out exactly how wrong the treatment standards applied are.

    pernicious-anaemia-society....

  • Thank you again for your advice and help and taking the time to read my blog. I really appreciate it.

  • Hi,

    Hope your letter is successful.

    Things said in a consultation can sometimes be forgotten. My understanding is that letters to GPs are filed with a person's medical records so are a more permanent record of issues raised.

    Link about writing letters to GP about b12 deficiency

    b12deficiency.info/b12-writ...

    Person who runs above website can be contacted by e-mail, details on website.

    I found fbirder 's summary of b12 documents useful to read. Link to summary in third pinned post.

    Have you read this BMJ b12 article?

    bmj.com/content/349/bmj.g5226

    This emphasises the need to treat people who are symptomatic for b12 deficiency even if blood tests do not show an obvious deficiency.

    Think most GPs trust the BMJ.

    PAS

    PAS tel no +44 (0)1656 769 717 answerphone so messages can be left, may take a few days to get a response.

    If you're a PAS member, are you close to any local PAS support groups?

    pernicious-anaemia-society....

    HDA patient care trust

    UK charity that offers free second opinions on medical diagnoses and treatment.

    They are usually quick to respond to enquiries.

    hdapatientcaretrust.com/

    "He went on to say that the guidelines have changed recently and he can only prescribed b12 injections for someone with low levels and pernicious anaemia"

    I don't understand why GP said this.

    "BSH Cobalamin and Folate Guidelines" came out in 2014 and although I guess they will be reviewed at some point in future, I am not aware that this has happened yet.

    b-s-h.org.uk/guidelines/gui...

    I gave a copy of the following to my GPs.

    1) PAS Symptoms checklist with all my symptoms ticked

    pernicious-anaemia-society....

    2) Copy of BSH Cobalamin and Folate guidelines

    I wasn't sure they were aware of these guidelines.

    3) Copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" It's up to date with UK guidelines, as far as I know.

    Flowchart from BSH Cobalamin and Folate Guidelines

    stichtingb12tekort.nl/weten...

    Flowchart makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial B12 treatment. This applies whether B12 is low or within range.

    IFA test can help diagnose PA but test is not always reliable. It is still possible to have PA even if IFA test is negative (called Antibody Negative PA).

    Flowchart also gives guidance about when Pernicious Anaemia (PA) should be diagnosed including Antibody Negative PA.

    "He said he would read my letter, double check the guidelines and get back to me by the end of the week."

    There is a section on PAS website for health professionals that your GP may find helpful.

    pernicious-anaemia-society....

    B12 blogs

    Martyn Hooper's blog may have stories that are relevant to you. Martyn Hooper is chair of PAS.

    martynhooper.com/

    There is also an interesting blog on B12 deficiency Info website

    b12deficiency.info/blog/

    I am not a medic just a person who has struggled to get a diagnosis.

  • Thank you for your reply, it has been very helpful with useful links which i am going to use today hopefully.

    Jen x

  • Hi Jennieralph88,

    Hope your appt. went well.

    "had 6 loading dose injections over two weeks with folic acid for a month"

    "twitching in muscles and pins and needles in my hands "

    Did you have (or still have) neurological symptoms eg balance issues, pins and needles, tingling, tinnitus, memory problems plus others?

    In UK, loading doses for B12 deficiency with neurological symptoms, is an injection every other day for as long as symptoms continue to get better (this could mean B12 loading injections for weeks even months) then it's an injection every 2 months.

    "BSH Cobalamin and Folate Guidelines" mention a possible review of loading doses after 3 weeks for those with neuro symptoms.

    6 loading doses over 2 weeks reads like the standard treatment for B12 deficiency without neuro symptoms.

    See info in BNF Chapter 9 Section 1.2

    evidence.nhs.uk/formulary/b...

    All UK GPs will have access to BNF. Probably a copy of BNF on their desk or bookshelf. Sadly quite a few on this forum struggle to get correct level of treatment if they have neuro symptoms.

    UK treatment info is also in BSH Cobalamin and Folate Guidelines, about a quarter through document.

    Neuro Symptoms

    pernicious-anaemia-society....

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage. Some people on the forum have considered pointing out the risks of not treating someone who is symptomatic eg potential spinal cord damage, to their GPs.

    There is an article on sub acute combined degeneration of the spinal cord (SACDSC) in the PAS library available to PAS members.

    Story on Martyn Hooper's blog

    martynhooper.com/2010/09/21...

    Link about undertreatment of B12 deficiency with neuro symptoms

    b12deficiency.info/b12-writ...

    Who gets PA and B12 deficiency?

    pernicious-anaemia-society....

    b12deficiency.info/what-are...

    b12deficiency.info/who-is-a...

  • Hey

    Thanks for your reply and help.

    Im seeing GP again tomorrow morning but a different one as this gp never got back to me lime he said he would. Ill be going with a new letter, my old letter and guidelines and bnf, copies if my blood tests.

    I feel worse today than last week. Had my oral medication for 6 days now today and do nkt feel any different. My memory has got worse and balance is worse. The twitching in my muscles and pins and needles are still there. Im not sure if i mentioned tinnitus yet but i have that too.

    Hopefully ill get on better with the other gp tomorrow.

    Thanks jennie

  • Sorry to hear you are feeling worse

    Does your letter contain a list of symptoms?

    I gave my GPs a copy of PAS symptoms list with all my symptoms ticked plus I added any neuro symptoms not mentioned on PAS list.

    pernicious-anaemia-society....

    I also gave them a copy of Martyn Hooper's book.

    Some people on the forum keep a symptoms diary.

    "Ill be going with a new letter, my old letter and guidelines and bnf, copies if my blood tests. "

    Are you taking a copy of "BSH Cobalamin and Folate Guidelines"? I gave a copy to my GPs.

  • Yea my letter included symptoms how it effect me daily and how it will in the future and what i wanted from them with references and quotes..my gp said he would read it and get back to me.

    I have a bnf, bsh guidelines, NICE clinical knowledge framework, PAS symptom checklist, copies of my blood tests and my letters.

    Thank you for your help and guidance. Its reallg appreciated.

    Jen x

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