Is this negligence?

In another post I received some excellent advice (particularly from foggyme ) regarding putting in a letter to my gp asking for b12 injections to restart urgently following the loading doses due to 'dangerously high serum b12 levels'.

I also contacted Tracey Wittey at b12def who ws also a great help.

I put the letter in yesterday.

Today the practice manager replied and said they will undertake a thorough investigation and will reply within 28 days, I am already going backwards since my last jab 3 weeks ago.

Is there any point replying to that ?

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  • Oh dear Kenbowns. This is so bad it's beyond words.

    Looks like they're treating you as a 'complaint' rather than an urgent medical problem - and it's ridiculous.

    I'm assuming that you stated in the letter that you were worried about the potential for irreversible damage due to the withdrawal of treatment and that you wanted treatment to be recommended? Not sure how they can leave that for 28 days. They were being negligent in their initial treatment and I would say that yes, it looks like the negligence continues. Though it's difficult to be quite sure without knowing what was in the letter and what you asked them to do.

    I don't see how you can not reply - though it's not looking good for a proactive response from them. Perhaps a short letter (that you could hand in at the surgery, for speed) stating that this was not the response you were looking for - rather you wanted to see a GP, as a matter of urgency, with a view to re-commencing treatment. And tell them you expect to receive a phone call from them offering you such an appointment?

    If you try that (and I know it will not be easy) and it fails, then the only other options I can think of is to contact the clinical director of the relevant health authority, or the relevant Patient Information Liaison Service (PILS), or complain direct to NHS England (directors listed on their website) or....oh grief, this is so,tough. All this takes time and what you actually want is treatment.

    Are you able to change surgeries?

    Or perhaps if you're really desperate, consider self-injecting?

    I'm really not sure what the answer is and perhaps someone else will have some other suggestions as to what you could try.

    One thing I do know: everybody here will know how you feel and be very angry on your behalf. It's very difficult to keep going when you face such demented opposition. And feeling so ill doesn't help one bit.

    I really hope that you find some energy and determination to carry on trying to get treatment (one way or another) and I do,wish I could offer more than a few words 😖.

    Please post again and let us know how you get on and take very good care x

  • Foggyme

    The letter was very carefully worded and made the point about irreversible neurological damage several times, I emailed a copy with all links to the relevant documents to back my case, I also handed in hard copies for the gp and practice manager.

    Under the circumstances I don't think that can be bothered to play politics with them, my health is more important and I just do not have the time to wait for them and their processes.

    I could reply just the once and make the point that you have made regarding not expecting this to go into a complaints procedure and that all I was looking for is some urgent help, I could also say that my health can't wait through a complaints process and ask them if they would kindly show me how to self inject the b12 which I would have to source from Germany.

  • Afterthought: in the meantime, have you tried topping up your B12 via nose drops, sublingual lozenges or even patches. Some people use them to keep going between injections and they work for some, but not for other. Injections are the best for of treatment but these may tide you over and keep you going in the short term (though I believe gambit uses nasal sprays to good effect, most of the time).

    Good luck x

  • I am taking 2x5000 Swansons per day but not sure that they are doing anything for me, maybe a little early yet.

    I suppose it is all pointing to self injecting but I must admit to being very reluctant and wouldn't know where to start really.

  • Hi again Kenbowns. Good plan about surgery (as your reply above). However, I doubt that they'd be happy to teach you to self inject supplies bought elsewhere, especially as they won't even treat you. However, some people have found that once they tell their GP's that this is what they intend to do, then the GP decides to treat them - but this is rare.

    GP's also react very differently to the self-inject issue: some are happy for their patients to do it, teach them to inject, and prescribe the B12 (again, rare), some tolerate it (reluctantly) and some remove patients from their books and tell them to get another GP (mine would be of this ilk). So, it's a tricky issue!

    Sublinguals - yes, some people do say that they do nothing at all for them. I hear that nasal sprays can be slightly more effective.

    Self injecting - yes, I can understand your reluctance, but it is really very easy (once you've done the first one). And people often welcome the freedom from GP displeasure and the ability to just take B12, when needed. And be well 😀.

    I've never looked at them but understand that there are lots of videos on You Tube that teach self injection - perhaps you could take a peek and see what you think. There are two methods IM (intramuscular - into the muscle). And SC (subcutaneous - just under the skin). I use the IM method.

    Another tip if you decide to go down this route. Inject an orange first. It feels very like injecting a human, except the skin is a little tougher, and it would enable you to get the hang of handling / working a syringe (do it with water - don't waste your precious B12!).

    So, look at the videos and see what you think. If you decide that this is what you want to do, one word of caution. On very rare occasions, it is possible to get an allergic reaction to B12 that requires urgent medical care (anaphylactic shock). For this reason, it is best to stick to the type of cobalamin that you have already injected with (since you know that no such reaction will occur). If you intend to use a different cobalamin, then the first injection should be done under medical supervision (though how this could happen in the circumstances - no idea 😖).

    Finally, if you need advice about where to buy Hydroxocobalamin (I assume) and the types and sizes of needles / syringes etc., post again and people will be able to advise as to the what and where.

    Take care and good luck X

  • Many thanks again Foggyme, I will consider your advice and look at the videos too.

    Do you happen to know which nasal spray gambit uses ? Or where ir is obtainable, holland and barrett maybe ?

  • I source nasal sprays from detoxpeople - they do a range of different ones - Yuliv is easy to use. Their nasal drops are easy but its a bit of a knack and I do find that I initially need to prime the dispenser more than I do with the Yuliv but it is often out of stock ... not sure if that is my fault for singing its praises so often :)

    PAS-admin has also made some suggestions in the past but don't think she tends to purchase in the UK.

    link to Yuliv (which is in stock at the moment :))

    detoxpeople.eu/index.php?l=...

    link to nasal drops - different strengths and hydroxo or methyl.

    detoxpeople.eu/index.php?l=...[title]=Y&s[short_desc]=Y&s[full_desc]=Y&s[sku]=Y&s[match]=all&s[cid]=0&s[search]=b12+nasal+drops

  • Thankyou Gambit

  • yes, foggy me, my gp washed her hands of me when I said I had had an injection from a private gp - but I was desperate at the time - I can still hear her saying go go and pointing at the door.

  • Hi Kenbowns

    I am in the process of having blood taken for thyroid tests as no on is interested in investigating another possible reason for my ill health. (Lots of auto immune diseases already diagnosed and quiet at the moment). If that turns out to be negative my next option is to try for VitB12 investigation. I am not holding out much hope that the GP will listen, hence DIY blood test for thyroid.

    If I hit a blank wall, I am going to self inject to see if it makes the difference I pray for. Hopefully, I can pick up advice here, like you on how to go about it.

    I do know the actual injection process, if practiced hygienically is straight forward and you will get used to it very soon, especially if you have the looked for positive result.

    Please let us know how you get on. I shall be following you to pick up as much help as possible.

    I am just so sorry that you are having to go through this. It is so tough and totally incomprehensible that such blocks and deliberate misunderstanding is put in our way when all we want is good health. It could make you weep.

    We are all in this together. You and I are not alone. Dig deep, keep going because you are your only advocate. Courage and strength to you.

    Best wishes

    ⚽️

  • Thank you for your words of support footy and I will keep updating, got to admit this is starting to get to me, I feel very down at the moment and I have never suffered with depression before.

  • Hi,

    Aplogies if i've asked before but is there any chance the PAS can help? Sometimes they can intervene on behalf of members.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Examples below of how PAS can help.

    martynhooper.com/2016/09/23... Interesting comments underneath this blog entry

    martynhooper.com/2016/04/24...

    martynhooper.com/2015/08/20...

  • Hi, you may have asked.

    I have spoken to Martyn a couple of times. As yet I do not have a diagnosis of pa, just b12 def and therein lies the problem for Martyn.

  • Hi Kenbowns,

    Just a quick word about sublinguals- for me, the higher dose sublinguals work best. I use Superior Source "No Shot" methyl sublinguals. The dosage is 10,000 mcgs.

    According to a recent post with a link to a paper by Kevin Byrne, a fellow b12d sufferer, only 5-25% of sublinguals are utilized by the body.

    On days between injections, I might do 2-3 of these a day. I recently tried to go longer between injections and used about 5 or 6 in place of an injection. That seemed to do the trick. The only thing, of course, is the cost if one is depending heavily on sublinguals. The Swanson brand is probably a much better deal and you could try and take more while you are trying to determine next steps.

    Best wishes! :-)

  • Ndodge

    Many thanks for your input, you certainly do intake a large amount daily which is obviously working for you.

    Your suggestion of upping my intake in the interim sounds a good idea, I have to do something if my gp practice has up to 28 days to investigate (with a caveat to extend)

    I know that serum b12 is now irrelevant but yours must be off the scale lol

    All the best.

  • You are very welcome! Hope more is better for you as well in the interim! :-)

    And yes, my serum levels probably would break the testing machines! :-)

  • I think that one of my main problems is that I do not have an exact diagnosis of pa, neg ifa (I know about the unreliabilty )

    My gp mentioned the lack of diagnosis but I said that there is still low b12, I am wondering now if this is his basis for refusing any more jabs ? Along with a serum b12 above 2000

    It also is starting to make me think is there something else causing all of this and makes me doubt myself considering to self inject.

    But I have to say that all the myriad of neurological symptoms matched up b12 def and I did feel a little better during loading jabs and have gone backwards since he stopped them......I suppose I am answering my own question really ?

  • Yes, sounds like you did answer your own question. :-)

    I don't have a diagnosis of PA, since I have never been tested, but I do have IBS which actually might be gastric atrophy due to PA. I have absorption problems, not only with b12 but also iron and vitamin D.

    I'm in Portland, Oregon, U.S. and I go to a naturopathic physician who understand about b12 & prescribes a much as I need. I'm very lucky. She says it doesn't matter why I'm am low in b12, the treatment is the same no matter why-Lots of b12!

    Only you can decide whether to self inject or not, however, remember that it is how you feel and what relief from your symptoms you get from the b12, not serum levels that count. B12 is not toxic even in very large amounts! There is documentation proving this, maybe in the pinned posts?

    Try lots more of the sublinguals and if higher doses of those seem to help, then you would have more reason to believe that you just need more B12. It's a good idea to take a good B Complex also- all the B vitamins work together. Good luck! :-)

  • Just a bit more info- the reason I take so much is that with high doses of B12 my maddening tinnitus goes away! I probably would not need so much but for that one stubborn symptom which makes me want to bang my head against a wall. Taking lots of sublinguals is a much better alternative! Lol

  • Wow ndodge

    Tinnitus, tell me about it lol

    I have had this for app 10 yrs but I have always put this down to my 35 yrs in the steelworks in Sheffield, maybe not, this could have been b12 deficiency all along because my health has always been strange during this period. I'm not too sure that loads of b12 could reverse this particular symptom after all this time ?

    I wish that us poor souls in the uk had broadminded naturopathic physicians.

    Re gastric atrophy, luckily I had the camera down my throat about 6 months ago, all ok, would that mean that pa was unlikely ?

  • Hi Kenbowns, I've had tinnitus since 2002 or 2004- about 14 years now and why I think it's the most stubborn symptom. It goes away after an injection about 90% of the time and if it starts creeping back, I take a couple of those whopping sublinguals. & it subsides.

    So, very, very slowly, fingers crossed, it is healing. I have been on methyl injections for about 13 months now. Hope springs eternal! :-)

    I am lucky to live in Portland Oregon where there is a lot of alternative thinking in general, and an emphasis on natural everything- food, health care including naturopathic doctors with lots of acupuncture, massage and organic everything thrown in the mix!

    However, my health insurance does not cover the cost of the naturopath so it does get spendy. But I only have to check in with her about 2 times a year and she prescribes the b12 which my husband injects me with. Much cheaper than having her do it at her office!

    But I still thank my lucky stars that I'm in a place where there are open minded naturopaths who are much more knowledgeable about vitamins and nutrition.

    As far as your procedure, if it was an endoscopy, I don't know if that shows gastric atrophy. I have never had an endoscopy. Actually I don't know how gastric atrophy is detected! I should know but don't. Maybe someone else could enlighten us on this issue.

    I think you lot across the pond (I'm picking up a little English English from this forum) or in American English- I think you guys over there are lucky, too, in that you can get good quality B12 from Germany and it is less money per injection than what I have to pay here.

    Back to the Tinnitus- it is the worst! I, like you, thought it was just my ears but it turns out it originates in the brain, just sounds like it is in the ears. Probably the myelin sheath in some part of the brain is damaged and the B12 heals it. Not always if it is long standing but I'm giving it the old college try and hoping for the best. To have it go away temporarily after an injection & with sublinguals feels like heaven!

    Hope I wasn't rambling too much. And would love to hear how you get on! :-)

  • Thanks for your reply ndodge.

    During my ten loading shots I started to feel better in myself, some of the fog lifted and the blurred vision improved slightly.

    As for the tinnitus, nothing changed, worse if anything.

    B12 def is a very confusing illness to the point where I wonder if there is something else going on ? I already have one autoimmune condition in psoriatic arthritis but getting to see specialists in autoimmune stuff (would that be an endocrinologist ?) will be very difficult at the moment as I am in dispute with my gp.

  • You bet!

    I have another autoimmune condition like you do -only mine affects my eyes- I have a condition called Uveitis where there is chronic inflammation inside my eye- have dealt with it since I was 15.

    As far as B12d goes- it can affect so many things- vision, gait, balance, tinnitus, fatigue and on and on. And sometimes, things get worse before they get better. Many people have written in that some of their symptoms are worse for awhile after loading doses . The explanation from Gambit62 and fbirder, who are very knowledgeable, say that it is part of the healing process- like the nerves are healing and "waking up' and so symptoms seem worse but are in fact healing- it just takes time.

    So, that fact that your tinnitus got worse means the B12 was doing something and I'm sure it was nothing harmful- sounds like it was actually waking those nerves up! Repairing damaged myelin sheaths that go around the nerves- rather like insulation on an electrical cord- takes time. So don't give up! I haven't, but it is a very slow go.

    For a long time I never noticed that the B12 was doing anything for my tinnitus and didn't expect it to, but one day, months after I started injections I all of a sudden realized that my ears were quiet! It's not 100% of the time but enough to think that the B12 is doing its healing thing. And I have lovely days where everything is blessedly silent.

    I used to worry about doing too much B12 but I don't anymore- it is not toxic and what the body doesn't need gets expelled. I know I need it because I can't process other vitamins either.

    This might have been mentioned to you but one needs good levels of other B vitamins in a good B complex that contains folic acid or in my case, folate. I buy a food based vitamin from Swanson's vitamins because it is easier on my stomach. Garden of Life 'Vitamin Code' raw B complex. I only take one as 2 is too much. Potassium and magnesium are also important and people get potassium by eating bananas and other potassium rich foods- you can Google a list of foods that contain magnesium and potassium.

    I think it is a rheumatologist who deals in auto immune issues. Endocrinologists deal in glandular problems, I believe.

    Take good care xx

  • Ndodge

    thank you so much for your very encouraging reply, I suppose for someone such as myself who is not self injecting it is a quite daunting step into the unknown.

    I am taking a B complex and a multivit alongside the swansons 5000 methyl.

    I took extra methyl yesterday following your suggestion and felt rough the next day but I think that would have been entirely coincidental.

    I am going to Spain on holiday in a couple of days time but when I return I will have to really get my head around the SI (that is if the gp hasn't restarted my shots ) I'm not holding my breath on this one, i spoke to the practice manager yesterday who informs me that she is obliged to inform NHS England of any letters of my type received, also the gp will not have read it yet as he is off work ill.

    Also I think I will order some private bloods for a full Thyroid panel and Potassium, Magnesium etc, I may even do the 23andme genetic test too.

    Your advice and support are greatly appreciated.

  • Hi Kenbowns,

    What a lovely reply you sent me! But I am so sorry to hear you felt a bit rough after following my suggestion! :( Hope it was just coincidental!

    And I can't believe how you are being treated by your doctors but on second thought, I can from reading posts from on this forum of similiar bad treatment. And U.S. doctors aren't much better- that's why I went to a naturopathic doc.

    And I'm not so brave- my husband gives me injections! I could do it if I had to but much prefer that he give them to me so, again, I am lucky.

    If you decide to SI, there are U tube videos to watch and you can always get very detailed info and instructions from this forum.

    I hope you have a wonderful holiday in Spain! or Ojala que tenga un buen vacaciones!

    :) xx

    N

  • Lol

    I have basic Spanish which allows me to feed and water myself but this is not up to your standards, are you fluent then ?

    And yes I very much intend to try and enjoy myself.

    Do not worry about your suggestions making me feel rough, at the end of the day I have b12 def and we all know how up and down that is.

  • Hi again,

    No I'm not fluent, I was getting there by studying Spanish for about 5 years but did not keep it up.

    I know some Spanish, like you, enough to feed and water myself but not much more. I just happened to memorize that one phrase, ha ha! It is the subjunctive tense which I was just starting to learn.

    I also took Swahili at my university and remember one line from that language:

    Kisu na kikombe vime chafuka= the knife and cup are dirty! :-)