What is my next move ?

I was diagnosed b12 and folate deficient ( b12 179 and folate 2 ) MCV of 103, IFA negative, also had endoscapy which didnt show up any gastric atrophy just benign polyps. I have plenty of neurological symptoms, tingling in limbs, sight distubance, tinnitus, a very foggy head etc. I had been on ppis for app 5 years ( now stopped )

Following a fight with gp he conceded to 10 loading dose jabs alongside folic acid tabs, also been supplementing with 5000 Swansons sublinguals.

When the jabs had finished I went back to gp to inform him that I needed to be treated as per the bcsh guidelines. Jabs every other day until there is no further improvement.

He wouldnt do anything until he had done my bloods.....I knew what was coming.

B12 was over 2000, folate was 22, mcv down to 101 (or was that the effect of the folic acid. He flatly refused any more b12 as I was now at dangerous levels (really ?)

I told him that he must treat the clinical symptoms and not the blood results and showed him this in fbirders summary document.

I have to say that I feel much better in myself but the jabs didn't affect any of the neuropathy in any way.

So what is my next move ?

1, write to gp and practice manager to clarify the decision and ask why the practice will not follow all the guidelines?

2, stop supplementing and obtain an active b12 test privately in a few weeks time ?

3 continue with high levels of sublinguals until I go through gp process ?

I am a litte reluctant to self inject at this stage, what do you think ?

37 Replies

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  • Go with Option 1.

    If that fails joint he PAS and ask them to help.

  • Fbirder

    I have joined and I spoke to Martyn a couple of days ago, he thinks that I have done all that I can except the letter and self injecting.

  • I'd suggest you look at this blog and consider joining the PAS if not a member already.

    martynhooper.com/2016/09/23...

    Personally I think that you can drive yourself mad trying to establish exactly what is causing poor B12 absorption. The IFA coming back negative doesn't prove that you don't have B12 deficiency - it isn't as good at picking up the existence of IFA as it could be - and gives a false negative about 50% of the time.

    Active B12 looks at particular types of B12 so is a bit better than serum B12 but still doesn't say what is happening at the cell level - MMA and homocysteine levels can help clarify if there is B12 deficiency at the cell level but they also need to be done before supplementation/treatment, so I'm not sure that it is worth doing.

    Really I think the guidance should be to treat unless it can be established that the deficiency is solely down to diet (or a tapeworm infection) and make it clearer that there are more absorption problems than just PA.

    I'd probably continue with the supplementation - though not sure I'd put all my B12 in the methyl basket.

    I'd certainly look at what support and guidance I could get from the PAS

    You might also find this sight of interest if you are not aware of it

    b12deficiency.info/b12-writ...

  • Thank you gambit and fbirder for your help

    Gambit, what else would you add to the sublingual methyl ?

  • I tend to use nasal spray rather than sublingual and some self-injection - I use a mix of hydroxo and methyl as nasal spray and also use some adenosyl sublinguals. I think it is worth trying different types of B12 and different mixes and seeing which works best for you. Not everyone finds methyl the best - its good for some symptoms for me but by no means for all and does nothing for me in relation to mood.

  • Hi Kenbowns. Your doctor is being quite stupid...and negligent. Unfortunately that's something we hear quite often here....well, very often!

    I agree with fbirder and Gambit.

    Suggest you write to the surgery, but be aware that the practice manage is employed by the GP's!

    It would be a good idea to include guidelines and information from the PAS to supports your arguments for continued treatment. Use especially, NEQAS, BSCH and BNF guidelines, together with the flow chart for treatment and fibirder' document that highlights relieve at information from a wide variety of guidelines (Frank Hollis document). You can find all the information you need in the PAS pinned posts to the right of the page when you in to this forum.

    It will strengthen your argument if you ask them to a) provide an explanation why they are refusing to treat you and b) ask them to provide medical evidence to support their position. They won't be able to 'cause there isn't any!

    I don't know if you are aware, but as you have neurological symptoms, you should be treated with 1mh Hydroxocobalamin for 6 x loading doses, then1mg Hydroxocobalamin every other day until no further improvement, and then 1mg Hydroxocobalamin every eight weeks (though that's not enough for some people - but that's another story). This information is contained in the British National Formulary (BNF)...your doctor has a copy on his / her desk so can look it up. It's the second paragraph down so they'll probably have to read further than usual!

    It might also, therefore, be a good idea to conclude your letter by stating that as you have neurological symptoms, you are worried about the potential for irreversible neurological damage if they do not immediately treat you according to the guidelines you have provided (make sure you include The NEQAS guidance). Then ask for the letters and evidence you have provided to be put on your medical file!

    The best way to get a quick positive response from them is to focus of the neurological damage and the potential for irreversible damage, and the potential for them being held liable!!

    State that you would like a response within 5 working days (and that's being generous, I think - but you will have to be brave to do that), or you will escalate your complaint further.

    Keep a copy of the letter and evidence that you send with it, and if your GP STILL refuses to treat you, write a letter of complaint (and include the original GP letter) to the clinical director of the trust that covers your surgery, asking that person to please arrange for your B12 treatment to commence immediately.

    With reference to the active B12 test - as you have had B12 injections already, it can take months or even up to a couple of years for your B12 levels to drop to pre-supplementation level (that's normal / usual). So probably not much would be gained from having this test.

    The sublinguals won't hurt you...but you'll be unlikely to get enough to start healing any neurological damage...B12 injections are much more effective, and the recommended treatment.

    It quite terrible that you have to go to these lengths to get the treatment you need and I know exactly how you feel because exactly the same happened to me πŸ˜–. And we are not alone!

    It took me four months, many meetings ( and 'discussions'!) with bits of paper (the guidelines) before he finally agreed to re-start my B12 injections. But only every eight weeks! Which wasn't enough. Whilst all this had been going on, I started to self-inject so now just top up with B12 whenever I need it πŸ’‰πŸ˜€.

    It was such a relief when I took control of my own treatment and didn't have to rely on 'them' to keep me well...and it made it easier to carry on fighting, as well! (I did that just to keep in the 'system'.)

    If you do decide to self-inject, it's really very easy (after the first time) and there are lots of people here who can help you, if needed.

    Very good luck with your ridiculously idiotic GP and please let us know how it goes.

    Take care πŸ˜€.

  • Foggyme

    Many thanks for your reply and support.

    Did you have neurological symptoms? If so how long were you self injecting before they cleared ?

    If my pins and needles didn't get any worse I could live with that but my main concern is the visual disturbance and the feeling of my head being elsewhere and slight balance issues.....oh and my thumping heart.

  • Hi Kenbowns. Yes, I did have neurological symptoms. Been self injecting for three months and I still have them. But I have a positive ANA test so am being investigated for other autoimmune conditions.

    Having said that, I'll continue to self inject until or unless somebody tells me that something else is going on. It will do me no harm and just may do some good - eventually!

    For some people, it takes many months to feel the full effect of B12 injections and unfortunately some do not fully recover. But please don't assume that this will happen to you.

    But this shows why it's important for you NOT to simply 'live' with the symptoms. These may get worse if not properly treated with the appropriate regime of B12 injections.

    And you shouldn't have to put up with it! I'll say no more about that or I'll be off on one of my rants against incompetent GP's 😀😀

    And I know that 'elsewhere' feeling so well...

    Good luck πŸ˜„

  • Foggyme

    Thank you

    What is a ANA test and was this something you had to do privately ? Sorry for the invasion of privacy.

  • Grief Kenbowns, no invasion of privacy so please don't worry about that πŸ˜„

    The antinuclear antibody test is a pretty broad test that, if positive, tells you that something is going on with your autoimmune system. Though it won't tell you what! What it will do, if positive, is flag the need for further investigation to find out what is going on.

    They are very easy for your GP to do via a simple blood test and are quite commonly done by GP's as part of routine investigations. So it's quite in order to ask your GP to do one, especially if you have unexplained symptoms or another member of the family who has an autoimmune condition (I.e. Diabetes, Hashimoto's thyroiditis, PA etc).

    You can also get this test done privately. Blue Horizon Medicals being one company, but there are quite a few others. It's worth checking a few 'cause prices vary quite widely. Not sure how much this test costs πŸ˜–.

    Perhaps try your GP first 'cause it's quite a common test and not something you should be forced to pay for.

    Good luck πŸ˜„

  • Thanks again foggy

    I do have Psoriatic Arthritis which I believe is an autoimmune condition.

  • Ah ha...go ask your GP for the test...surprised he hasn't done one!

    Autoimmune conditions are like bus - they all come along together!

    πŸ‘

  • Hmmm

    What to do first lol

    Ask for the test or pee him off with the letter ? I suppose continuing with the treatment would be the priority here ?

  • Hi Kenbowns. Get the B12 first...could,you try one last time to talk to him, taking evidence and asking him to look at his own copy of the BNF (on his desk). You could ask for the test too.

    And if none of this works, send the letter PDQ.

    πŸ˜€

  • Hi Foggy

    Done all of the above yesterday, we had major words, he said he could refer me on and then I could try to give them a medical lesson too !!!!!

    I didnt get what I wanted but he was seriously riled lol

  • Oh that is bad. So rudeness has been added to negligence.

    Can you change surgeries?

    Trouble is, while you wait for a referral ( or a surgery change) you're not getting the treatment you need!

    When my GP stopped B12 injections (more negligence), I started self-injecting. And I'm so glad I did πŸ˜€.

    Who DO these GP's think they are! Grrrr....

  • You need to get your injections sorted first. 2000 pg/ml is where you want to be to repair nerve damage. Then take as much folic acid as you can tolerate up to 5mg, spread to folic acid over the whole day, you also need a daily multivitamin and B6 to supplement the nerve repair,

  • Thankyou

    Could you suggest the products for multivit and b6 please ?

  • I get mine over the counter at my grocery store. Centrum for the multivitamin and B6 at any number of brands at 100 mg tablets,

    The multivitamin fills in for all the minerals, metals and other vitamins that b12 needs to do its job.

    Folic acid also comes OTC in either 400 mcg or 800 mcg tablets, I take 2x 800 mcg 3x a day to get 4.8 mg total for the day.

    I also supplement with 2x methycobalamine 5000 mcg sublinguals any time I feel a symptom like brain fog coming on.

  • Hi Kenbows...please take care with folate and B6 supplements...see reply to Pvanderaa.

    Whilst the doses stated may suit some people, they may not suit others.

  • Ho Pvanderaa. I'd suggest testing folate levels first. To much folic acid can cause muscle cramps...and a host of other things too. I took 5mg daily and it was far too much for me...levels went sky high and made me worse.

    Also...too much B6 can cause peripheral neuropathy...if there's B6 (pyridoxine) in the multi vitamin and then an additional supplement of B6 is taken, this risks the change of having way too much.

    Extracted from drugs.com:

    Seek emergency medical attention if you think you have used too much of this [folic acid] medicine.Overdose symptoms may include numbness or tingling, mouth or tongue pain, weakness, tired feeling confusion, or trouble concentrating.

    I had them all! πŸ˜€

  • I agree with your recommendation to test folate. Also I had to build up my folic acid as I could only tolerate 3 mg at first.

    Monitoring symptoms is critical to getting everything balanced and stabilizing the roller coaster ride that is the recovery from a B12D,

  • Indeed πŸ‘

  • Pvanderaa

    If you read my OP I already have a folate level of 22 following 6 weeks worth of Folic acid every day, I think this should be sufficient for a while lol

  • You need to get your injections sorted first. 2000 pg/ml is where you want to be to repair nerve damage.

    I thought I've read almost everything on B12, but I've not encountered this before. Do you have a source for it, please?

  • Link about complaining if unhappy

    citizensadvice.org.uk/healt...

    HDA Patient Care trust

    Free second opinions on medical diagnoses and treatment

    hdapatientcaretrust.com/

  • Many thanks for these links sleepybunny.

    I will try my own letter to gp first though.

  • I am going to put in the letter asap but I forgot to mention to you all that he has referred me to general physician at the hospital (no date yet)

    Can he hide behind this referral and say that it is now out of his hands or does he still have a duty of care to me ?

    Hope it is the latter as my neurological symptoms would be going untreated.

  • Hi Kenbowns. All the guidelines state that B12 deficiency with neurological symptoms should be treated immediately to prevent the potential for irreversible neurological damage.

    So, yes...your GP should treat you immediately...this goes beyond a duty of care and points directly to negligence if he does not!

    Have you tried ringing Martyn Hooper at the PAS...often, a telephone call from Martyn to either the practice manager or the GP concerned will do the trick.

    Or you could write a letter to the GP, enclosing the relevant guidelines (see PAS pinned posts), asking him to provide explanation for why you are not being treated, along with medical evidence to support his decision - he won't be able to provide any! State that you want treatment to start immediately and ask for the letter to be put on your medical file.

    But the quickest and perhaps more effective solution would be to contact Martyn and ask him if he will give the surgery a call.

    I'm really sorry that you're having to go through this just to get treatment that is cheap, easy to delivery, absolutely safe...and cheap! Disgraceful!

    Please let us know how you get on. Good luck x

  • Hi again Foggyme

    You provided some similar fab info earlier in this thread which I am going to follow, I just wondered about the referral really.

    I am now a member of PAS and I did speak to Martyn last week but he seemed to think that I had done as much as could have done except for the letter and self injecting. I was hoping that he could intervene in some way even if it was just a phone call.

  • Sorry, quick 'cause just going out....for neurological symptoms, you need a referral to a neurologist (not a general physician). Your GP is passing the buck!!!

    Did you specifically ask Martyn to ring your GP - could call again and ask?

    If you have gastric problems as well (a sure cause of B12 deficiency) you also need referring to a gastrologist.

    It is your right - your GP cannot refuse these referrals if you have relevant symptoms. Can't re all but if you have iron deficiency anaemia, you should have. Two week gastro referral, with mandatory endoscopy and colonoscopy.

    Good luck. Be interested to hear how it goes x

  • Ok I will try Martyn again

    I do not have any gastric problems at the moment, I did have some pains app 6 months ago and gp sent me for an endoscopy which was clear other than some benign polyps, although Martyn said that these needed keeping an eye on, I thought that he said these were common in pa ?.

  • Not sure about that Kenbowns, but if Martyn said so, it must be so πŸ˜€πŸ˜€!

    Good luck x

  • Many thanks to everyone that has contributed to this thread and given me some excellent advice.

    This morning I had another chat with Martyn Hooper following promptings from a few of you.

    He asked me to inform everyone that without a clear diagnosis of PA he cannot intervene on my behalf as this would be deemed to be him challenging any gp decision, obviously he is unable to do this.

    In my OP I may not have made it clear that I do not have diagnosis for pa, just b12 and folate deficient with a neg ifa result, I have had 10 loading shots, if this omission on my behalf lead any of you to advise me as though I had been pa diagnosed then I sincerely apologise.

    Also, as there is no diagnosis as yet, Martyn seems to think that writing a letter to my gp would be a waste of time, strictly speaking I think that the gp should treat me as abnegpa (sic) due to my symptoms but as Martyn says that would mean he would have had to read all the guidelines which is unlikely.

    Does anyone know anybody that has had shots reinstated in this position ?

    TIA

  • Hello again Kenbowns. First, can I say that I did not find your post or any of your responses misleading. Lots of people here have been diagnosed with B12 deficiency but are unable to get a PA diagnosis either due to the inaccuracy of the test or the incompetence of their GP's!

    And yes, I have been a similar position. My GP stopped my B12 due to B12 toxicity (ha, nonsense) but I managed to get my B12 jabs reinstated (8 weekly), though I do need more than that so also self-inject inbetween GP visits.

    I've managed this by persevering with my GP / practise nurse, taking in guidelines and Information on at least five different occasions.

    My GP finally reinstated my B12 due to neuro symptoms with, as yet, no other explanation.

    I suspect that I may have antibody negative PA (lots of gastric issues / ulcers and low ferritin & iron) and will continue to inject B12 unless or until somebody tells me that I have another condition....and the lack of a PA diagnosis means that I can insist that my GP / consultants keep looking until they find something to help me get well.... Whilst, of course, continuing with the B12.

    Oh, and, I've just had a positive ANA test - very high, apparently, so something is definitely going on in the autoimmune department.

    So...keep at it, I say. Especially as you have symptoms. Your symptoms mean something...something that needs fixing! And in the meantime B12 will do you no harm (if you can get it) and may do you some good.

    And you HAVE been diagnosed with something....B12 deficiency!!! And the treatment for that is B12 injections!! Same as the treatment for PA. If your B12 levels are now high it's simply because you have had injections. They should be high. It does not mean that the deficiency has 'gone' (unless it was temporary due to medication or diet - but this is quite rare).

    The rule with B12 deficiency is to treat the symptoms, not the blood results.

    Please do not feel that you should not be here or ask for help simply because you have yet to get a PA diagnosis. SNAP. There are many of us too.

    So keep at it with your GP, take evidence and information and don't give up πŸ˜€.

    Sorry if I've gone on a bit, but I'm cross on your behalf.

    Please do post again as and when you need help or simply want to vent...many here have been in your position and will be happy to help as much as we can.

    And do ask any questions that will help...

    Take care πŸ˜€

    P.s. Martyn tested negative for PA until his third lot of tests....

    AFTERTHOUGHT AND EDIT: B12 deficiency is not always caused by PA. I think one problem for Martyn may be that he represents the PAS and therefore can only speak to PA issues. But...

    Have you seen the website B12deficiency.info ? Tracey Witty (the founder) is a vocal advocate for all things B12 deficient and also advocates on behalf of patients - not sure if this includes contacting GP's on patients behalf, but worth a shot if you get really stuck. The site also contains lots of useful information, including a section that contains draft letters that you can copy, paste, edit according to you needs, then send off to your GP! And its focus is entirely B12 deficient πŸ˜€.

    Good luck πŸ‘

  • Hi again Foggy

    Many many thanks for your continued support, the incompetance makes my blood boil although I try to contain this when I see my gp ( I did a better job than he did lol )

    Omg my OP did not mention 5 years worth of ppi's either, a likely cause amongst others or did I mention that both my grandmothers had pa,I told the gp this though....whoooosh.

    I also have Psoriatic Arthritis and low testosterone using replacement hormone gel.

    Yesterday I obtained my latest blood result print outs, my testosterone is again below the required level but what was revealing is that there was a side note that said that I should have been referred to an endocrinologist, none of the gps ever said that to me, considering this and other things pointing at my autoimmune I think that I would benefit from a chat with this type of specialist rather than the general physician that he has referred me to ( as you say, prob passing the book )

    I am aware of the b12 website and have learned much from it too, in fact I have swapped a couple of emails with Tracey,

    I am doing everything that I can to try to find an answer to my problems, I think I am driving my partner mad with it all but she is very understanding and only wants me to be well again, I think that initially you do so much reading and research that you start to think that others are may be wondering if you are a hypochondriac lol, when you try to explain to them what you are up against it sounds so unbelievable that you think that they may be thinking..... I bet that cant be true, just listen to the gp.....if you see what I mean lol.

    Finally I must say that you do sound as though you are really suffering with the gastric type stuff, as yet I have very little of that, I really hope that you find some relief in the very near future.

  • Hi again Kenbowns. Interesting point about the endocrinologist! An endo could do (amongst others) full thyroid screen, full adrenal panel and parathyroid hormone (PTH)... several autoimmune conditions (i.e Hashimoto's, Addisons Disease) and also hypoparathyroidism / hypoparathyroidism. And probably lots of other things as well.

    Trouble is B12 deficiency has so many cross-over symptoms with other conditions, that you have to get tested for everything!!!

    And I know exactly what you mean about driving partners (everybody) mad! And to anybody who isn't experiencing it, it is unbelievable! Everybody trusts doctor! And have no idea how wrong they can be!! Some days I really do wonder if it just me going insane - so I know exactly how you feel.

    Sometimes I read so much and think so much that I feel like my head will explode - then I go to sleep!

    Please you contacted Tracey...she's very good.

    Anyway Kenbowns keep at it and take care X

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