I'm desperately seeking advice...feel like we're going round in circles

My 19 year old daughter started presenting with pins & needles in her arms and legs, fatigue and tinnitus when she came home after her first year at uni in June. Our GP at home immediately suspected B12 deficiency especially as when he looked on the system her level had been just below range the previous year (189 range 191 - 880). However, this time it came back at 193 so just in range and so the saga begins...

She was referred to a neurologist who did MRI and nerve conduction tests which luckily ruled out anything else but he refused point blank that she had ANY symptoms of B12 deficiency.

By now it is September and time for her to return to uni. Her GP there also thinks B12 is a waste of time & admits he doesn't understand properly but agrees to just one injection a month despite her asking for a loading dose until symptoms stop improving.

A week later I took her back to our local GP who agrees to one injection but no loading dose.

In absolute desperation we consulted a private GP who agrees or loading dose but just before he gave her the first one, and knowing she'd already had 2 injections in 2 weeks, he bizarrely took a blood test. This has now come back over 2000 so he's refusing to treat her.

I have written a letter to the practice manager at her GP at uni asking her to be treated as per BNF and nice guidelines but had no reply.

I just don't know where to turn now. Her symptoms are getting worse and she's in danger of having to drop out of uni. Any advice would be greatly appreciated.

12 Replies

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  • Hi Me2801 I suggest you join the Pernicious Anaemia Society, It only costs £20.00 for a year's membership and they will intervene with your doctor if you are not getting the treatment your daughter needs.

    What sport of diet is your daughter on? Has her Folate level been checked?

    I wish both of you well.

  • Thanks for your reply. Her diet is good and mixed especially last year when she was in a fully catered hall and she eats plenty of meat etc. From what I remember (I'm currently away on what was supposed to be a relaxing holiday but I'm very stressed!) her Folate levels were mid range. I forgot to add she has been taking 5000mg B12 sublingually for a month without any success.

  • sublingual doesn't work for everyone as a mode of delivery - or, if it is methyl that you are taking then it may be that that methyl isn't a form that works. You can get hydroxo sublinguals so it might be worth trying those - other ways of delivery are nasal sprays and skin patches.

    however, that's something that might help rather than what you need which is someone who actually knows something about B12. The private GP definitely didn't know anything at all which is a shame. Same true about the neuro.

    Hope that the letter to her GP at Uni works, but in any case I would go with clivealive 's suggestion about joining the PAS

  • Thank you for your reply. I have now joined the PAS society but cannot contact them till I get back to the uk next week. She has been taking 5000mg methyl for a month is this long enough to say we should try hyroxo?

  • think it is long enough to say that methyl sublinguals don't work but there is no guarantee with hydroxo either.

    You say you are currently outside the UK - you can actually get B12 shots over the counter at pharmacies in a lot of other countries eg Germany, France, Australia, Egypt... so it may actually be worth trying the local pharmacist and see what they say.

  • Thanks for the idea...we're in Gran Canaria where apparently a prescription is needed.

  • well - you know have B12 availability to add to your criteria for choosing a holiday location :)

    sorry it wasn't available where you are.

  • Hi Me2801. Oh dear this is dreadful. Both GP's are wrong. Your daughter's B12 level is over 2000 simply because she has had B12 injections and it's what you would expect and hope for.

    It does not mean that the injections should be stopped, especially as she is still symptomatic. All the guidelines state that medic's should treat the symptoms, not the blood results and also that once B12 treatment has commenced, testing serum B12 levels is no longer required (unless checking to make sure the levels are not too low).

    As your daughter has neurological symptoms, she should be on the neurological regime of treatment (6 x 1mg Hydroxocobalamin loading doses on alternate days, then 1mg Hydroxocobalamin every other day until no further improvement, then 1mg every eight weeks).

    It's a bit difficult to know what to advise without knowing what you put in the letter. Did you state that you are worried about the possibility of potential irreversible neurological damage if treatment is withheld (withheld is a good term - wakes them up to the possibility of being liable). Did you say that you expected treatment to be commenced immediately? Did you include relevant guidelines to support your arguments? (sorry for all the 'did you's 😀).

    Another potential problem is your daughter's age - your GP may feel that he has to take direction from the patient herself.

    So here's a couple of suggestions that may work for you both:

    Print out and read all the PAS pinned posts - to the right of the page when you log on). Highlight all the bits that are releant to your daughter's case (so your GP can see them without too much effort). In particular look for the document complied by fbirder (Frank Hollis document - in the third pinned post), which summarises all the relevant guidelines.

    It sounds like nobody has done anything to investigate your daughter's B12 deficiency properly or tested to see if she has pernicious anaemia. They should. Especially if there is a history of PA or autoimmune disease in the family.

    There is also a diagnostic and treatment flowchart that her GP should follow. He / she should also investigate the cause of her deficiency and test (as a minimum) intrinsic factor antibodies, FBC, folate (B12 and folate work together - if folate is low, B12 won't be utilised properly), and ferritin.

    Print off the symptoms checklist from the PAS website and highlight all symptoms relevant to your daughter.

    Collect the information together, get your daughter to make a double appointment with her GP (you can go along with her if able), take the highlighted documents and insist that her GP reads the highlighted portions while there. He has a book on his desk called the British National Formulary (BNF - the medic's prescribing bible). Get him to look up Hydroxocobalamin - the neurological regime is listed in there. It's the second item down so he may have to read further than normal.

    If he still refuses to treat her, she should ask him to put this in writing and give medical evidence to support his position (he won't be able to 'cause there isn't any).

    Another option is to ring the practice manager at the university surgery to find out what's going on. Or the GP. Or the nurse. Or all of them. On a daily basis (I'm quite cross at the lack of action).

    Or - your daughter will have a pastoral tutor at university. Could she / you ask them to help - they have a duty of care and can, at least, support your daughter. Incidentally, there is information for students and university staff on the PAS website that your daughter might find useful to download and discuss with her pastoral tutor (if she feels comfortable doing this - no necessity to do so. But it might help if she needs extensions for coursework etc 😀)

    Or - you and/ or your daughter can escalate this to the clinical director of the relevant health district. Send a strongly worded letter asking for action to be taken immediately (and think about putting the points above in it).

    I suppose what I'm really saying is chase them...and keep chasing...with evidence from this site and the PAS website...they can't argue with that.

    It would be really dreadful if your daughter had to drop out of university because her ill-informed GP's are withholding treatment (and being negligent). The university does have a duty of care so you could always encourage your daughter to talk to her head of department and enlist their help (or there's also the student welfare department).

    Really hope you manage to get something sorted out quickly. I can only imagine how worried you must be and it'll be so sad if your daughter's university experience is blighted by this very nasty condition.

    Good luck and please post again if you need any further support...or get your daughter to post if she has any questions or needs any help.

    Take care both x

    P.s. Forgot to say...if your daughter does need some time out from university, it should be possible for her to arrange a leave of absence, rather than drop out completely. And no financial penalties attached to this 😀.

  • Thank you so much for your lengthy reply and advice. You have made us feel like we are not going mad. You have reinforced the ideas we already had but every medical person we have seen has made us feel like we're banging our head against a brick wall. Nobody believes that her symptoms are of a B12 deficiency and because she's within range they just won't take action. We expected her levels to be high after 2 injections but the private GP seemed so shocked that they were over 2000 and withdrew treatment for fear of overdosing...our research says that B12 is water soluable and therefore can't overdose. I just couldn't understand why he was testing her B12 levels at this stage. We will take action when we get back to the uk next week. Thank you for not making me feel like I'm going mad.

  • Things are getting more complicated. My daughter rang her health centre this morning and the reason they haven't responded to our complaint is that they have written to the neurologist to seek his advice...he was adamant she didn't ANY symptoms of B12 deficiency so that's going to make matters worse. I made her ring back but apparently the practice manager isn't in till tomorrow but he will ring her back tomorrow. Can he refuse to meet with us while waiting to hear from neurologist?

  • Do you know what her serum ferittin is? Iron deficiency is quite common in tandem with B12 deficiency esp in young women and could be adding to her fatigue.

  • Thanks for replying. I'm away till the weekend but will check when I get home. From what I understand everything apart from her B12 serum level is ok. Can B12 deficiency still be the problem or do other levels have to be low too?

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