B12 Doctors point blank refusing to listen

Hi all,

I was diagnosed with B12 def 3 years ago. I always had a recurrence of symptoms after 9 weeks, have been getting the injection early (10-11) weeks but the doctor in my practice who allows it is leaving. I had an appointment with the other doctor yesterday and explained all this, she told me it's every 11 weeks and that's it. I had a lot of evidence ce printed off stating if you have neurotically symptoms that you're to get it it every 8 weeks but she kept dismissing this! Wouldn't look at the notes and was pretty much horrible. Don't know what to do as my bloods come back normal and I told her this doesn't mean anything - basically told me to get a new GP if I'm not happy. I'm worried the same thing will happen with a new GP. Live in Northern Ireland - Any advice appreciated

26 Replies

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  • Sorry she said 12 weeks *

  • I wish I could help. I had the same issue with my doctor, I had given him the evidence too, but thankfully the haematologist I got him to eventually refer me to, agreed with me and I now get injections every 8 weeks. Do you have a haematologist who will write to your gp to prescribe b12 injections every week? It's still not enough and I use lozenges in between and occasionally self inject. You may need to do that if you don't get anywhere. I wish you luck. :-)

    I mean to prescribe every 8 weeks not weekly! That would be good.

  • I've never thought about a haematologist but I'm writing a letter to my GP now and I'll ask for a referal to one, thank you! I've also ordered the needles and syringes for self objecting but I'm really squeamish :(

  • Just take the plunge! Practice with some water and an orange, and then just do it! :) I went with SC because I was too afraid (and def squeamish!) to try IM.

    I took 5mg sublingual hydroxy B12 for a month and 10mg for another week, with zero change in symptoms (ordered via Swanson online). After just 3 injections of 1mg I noticed incredible changes. Obviously YMMV and it's always worth trying (but wouldn't bet my house on it LOL)...

  • How often do you do the injections? I don't understand the whole air thing, do you pull air into the syringe, then pull the solution in and squeeze out the air? Where do you inject?

    I've never even watched them giving me mine, all in my head ...πŸ™ˆ

    Thank you

    Ps YMMV? I'm new lol

  • I just started and am injecting every day for now (19 done so far!). I inject subcutaneously (SC) into my stomach area. Once my many neuro symptoms stop improving, I will move to weekly or maybe monthly and then go from there.

    My hands shook like a leaf the first few times! After a few, I felt more confident. Now I just stab and go. ;) I inject very very slowly and that helps against the sting. I also warm up the B12 first. I had issues keeping the needle on the syringe the first time LOL so I practiced with a glass of water - others practice with an orange.

    The air in the syringe thing depends on whether you're withdrawing the liquid from a sealed vial (in which case you need to inject air into the vial first then pull the solution into the syringe) or from an ampoule that you just break open (in which case you just need to put the needle in the liquid and draw it up). I think the european B12 is mainly from an ampoule?

    Then you can deal with the air bubbles. Here is a great explanation from pvanderaa:

    healthunlocked.com/pasoc/po...

    I don't do the penny thing since I'm not doing IM. Also if you're injecting SC then you don't need to change needles. I use a 26g, 10mm needle, but you can use a smaller gauge and shorter length. Insulin needles would work just fine. I also 'pump' the syringe a few times just after unwrapping it, to get it unstuck and to make sure it slides easily. 2mL syringes are better than 1mL ones - gives more room to work with air bubbles and drawing up the liquid.

    And watch some youtube videos :) I like this one for the actual SC injection:

    And here's one on drawing up the liquid from an ampoule - which I find the most tricky part of the whole procedure because you have to draw it up one-handed:

    Because I'm injecting so frequently, I use the right side one day, the left side the next day. I start nearest my navel (but not too close, an inch or few fingers away at least) and work my way out. Then I move up or down and do the same thing on subsequent days, to avoid injecting at the same spot. I keep an inch or so between injection sites.

    YMMV = your mileage may vary, i.e. your experience might be different :)

    Hope that helps! :)

  • It really does, thank you very much! If I go down the SI route I think it would be into my thighs, tummy is a bit soft and wobbly lol! Stab and go ohhh that made me flinch a little... need to toughen up and just do it I suppose. I have the neuro symptoms (my balance is actually getting worse) so at the minute that's my main worry. Where do you get the solution please? I've been on and saved Goldpharma to my favourites in case I need it.

    Thank you x

  • hahahaha before starting I would get really bad flutters in my stomach any time I read anything remotely connected to jabs! It gets easier. :)

    My stomach is real wobbly and fatty ;) I haven't attempted my thighs because they're super thick and I have a hard time grabbing just a small amount of skin. But do what works for you! :) Tons of videos on youtube (and they might help desensitize you haha).

    I ordered from mycare but only because versandapo wouldn't deliver to the country where I live (apparently they've exceeded some sort of EU quota for this year).

    By the way, for SC, I've found the 1mL ampoules MUCH easier to inject than the 2mL solution. I guess 2mL works fine for IM but it's a bit too much for SC - I sometmies end up getting leakage.

    My neuro symptoms were what spurred me to self inject (SI). My GP totally dismissed a B12 deficiency and refused to test antibodies. I had numbness in both hands and wrists, pins and needles in legs and toes, as well as loss of balance and muscle strength. Previously I had not realized that the last two were related to B12 deficiency but they were the first to improve - after just 3 injections! The numbness has taken longer though one hand is now nearly normal.

  • Yeap the flutters are me now even thinking about it but needs must 😷 My old doc was very good about it all but it was a 3 week wait if you needed an appointment so no good there.

    I can't understand GPS reluctance to educate themselves on it when it's obviously got serious complications for the sake of an injection costing less that Β£1!

    Ahhh leakage? I think I watched a video where a girl mentioned it sometimes bubbles back up ... so much to learn so yeah think I'll try the orange trick first! Needles and syringes should be here on Monday.

    I'm glad your tingling has eased off, I thought I had a trapped nerve in my shoulder but thinking this is related ! How's your balance after nearly 3 weeks? (Judging by the 19 injections its been 19 days?)

    Thank you :) x

  • Don't get me started on GPs. After many years of terrible GPs, I finally found a good doc. After so many year, <long story happened> a few months ago when I went to her about the B12 problems. I got the "did YOU go to medical school for 7 years"... ugh. Anyway!

    I bet a year's worth of B12 is cheaper than one B12 blood test! :-/

    Gosh yes it's been a crazy learning curve. The leaking kind of freaked me out at first! It doesn't happen every time - I think the slower I inject the less likely it is to happen.

    For years I had the trapped nerve feeling in both my shoulder blade and along the sciatic nerve, but it went away with thyroid medication.

    Something like 90% of my balance issues resolved after 3 injections. Now, I think it's only an issue when I'm tired, e.g. slight swaying when going upstairs at night but otherwise not noticable. My husband and I were discussing that my recovery seems to be exponential - very large improvement initially but then smaller increments as time goes on... so I suppose the last 10% will take a big longer to resolve (hopefully it will ALL resolve!). The numbness, as I think I already said, has responded more slowly. Memory - has you can see - has barely improved. :P

    It's been 20 days (I skipped 1 day). Wow time flies!

  • What are the lozenges and where do you get them please? X

  • I buy sublingual lozenges of b12 from Amazon made by Jarrow. I get the 5000 mcg ones. You can't overdose on it and used to take up to 10 a day before self injecting! Good luck.

  • Hi jcarleton. I'm so sorry that you are having such problems with your GP - sadly, we read of that a lot here, so you're not alone in this.

    You're right. If you have neurological symptoms you should have B12 injections every eight weeks (after the loading doses, which if I have this right, happened some time ago).

    If you check out the PAS pinned posts to the right of this page when you log-on, you'll find information about this.

    If you belong to the PAS, look in the library section for PDF relating to sub-acute combined degeneration of the spinal cord (there's information of the Internet if you don't belong to the PAS). This is a potential irreversible neurological condition that can arise if B12 deficiency is undertreated with B12 injections.

    I'm not suggesting you have this or pointing it out to frighten you. Rather, it would be very useful to take this along to your GP and ask her to confirm that you don't have this. As many GP's are unaware of this potential complication, seeing the information might prompt her to treat you with the eight weekly regime.

    In addition to this, as you have neurological symptoms, your GP should refer you to a neurologist for further investigation. These symptoms can be caused by other conditions, which need to be ruled out. And a neurologist could support your request for eight weekly injections (it's the standard treatment for those with B12 deficiency and neurological symptoms, so he/she should do).

    Also - has your GP checked your folate levels? B12 and folate work together so,if your folate levels are low, your body might not be able to utilise the B12 properly.

    It would also be worth having your ferritin levels checked - if these are low it will make you feel very ill indeed.

    Your say you were diagnosed with B12 deficiency three years ago so I'm just wondering if your GP has ever investigated the cause for this?

    If you have autoimmune disease in the family it is more likely that you could suffer from pernicious anaemia (an autoimmune condition) so it would be worth asking your GP to do a blood test for anti-IF antibodies and a FBC, as a general diagnostic tool. Might also be worth asking for inflammatory markers (C-Reactive Protein (CPR) and ESR - to see if anything else is going on.

    If autoimmune disease is in the family, it is also possible (but not certain) that you could develop other autoimmune conditions - thyroid conditions tend to go hand in hand with B12 deficiency so it might be worth having a full thyroid panel.

    Having said that, the treatment for PA is the same as the treatment for B12 deficiency - B12 injections. So the most important thing is that you are treated properly for this. And as you rightly recognise, it is important to have the correct regime of injections.

    Its also worth noting that if your GP is absolutely convinced that your problems are not due to B12 deficiency then, in view of your ongoing symptoms (particularly the neurological ones) she should be investigating further. And giving you more B12 in the meantime.

    You should not simply be left to suffer these symptoms with no investigations and support.

    So...try and tackle your GP again, taking evidence from the pinned posts (print them off, highlight anything relevant to your case, and print them to your GP). If she still withholds treatment, you could ask her to provide medical evidence in support of her decision (she won't be able to) and put it in writing.

    You may have to insist that she reads the informationabout sub-acute combined degeneration of the spinal cord - it's the most likely thing to make her take you seriously. If you have someone you can take with you, that might be a good idea since GP's are often more attentive and less hostile when there is a witness in the room. Sad, but true πŸ˜–. If that person has an understanding of B12 deficiency (perhaps by reading your evidence) then even better - they can step into support you if your GP tries to be dismissive.

    If she still refuses, the you could write to her, include your concerns about the impact on your long-term neurological health, include evidence from this site, and ask Her to treat you with the eight week injections. And don't forget to request a referal to a neurologist. This will then form part of your medical records so she will find it more difficult to simply ignore.

    Sadly, many people experience this kind of attitude from doctors where the treatment of B12 deficiency is concerned. Sometimes people get action by persisting with their GP's and taking evidence along to support their case. Sometimes this doesn't work πŸ˜–. Some change GP's - but there is no guarantee that a new GP would be any better - just the hope that this will be so.

    As a last resort, some are left with no option than to self inject in order to get and stay well. If this is something you end up having to do, then there are people here who can support and help you with that.

    Good luck with whatever you decide to do, plenty of support here if needed and please let us know how you get on πŸ˜€ X

    P.s. And you're right about your bloods...your B12 is 'normal' (or might even be very high) simply because you are having injections. This is how it should be. And the golden rule is treat the symptoms, not the blood results (see NEQAS guidelines in the pinned posts). And having lots of B12 in your blood doesn't tell you what is happening at a cell level - your levels can be in the 'normal' reference range but you could still have symptoms of deficency. (More evidence in the pinned posts).

    πŸ˜€πŸ˜€

  • Hi Foggyme,

    Wow that's a lot of information!

    I'll log onto the site tonight in on a computer and get a look through it all. I've started a letter so I can add all of these details in!

    I will update tomorrow with the final draft of the letter for any advice if it needs tweaked 😊

    Thank you

    Jordan

  • Yes...sorry...think I got carried away. Just frustrated and horrified at the way you're being treated πŸ˜–. GP sounds lovely! Not.

    Good luck πŸ‘

  • I think questioning why there was a note saying I wasn't allowed it put her back up and basically "she knows more" than the sufferer! Fuming wouldn't be in it either.

    23 and that fatigued and anxious I feel like an 80 year old but sure that doesn't matter πŸ™„

    Thank you

  • You've every right to fume...and everybody here knows exactly what it's like to feel like 80, on a good day!

    No way for anybody to live, much less a 23 year old. Keep strong and keep at it πŸ˜€

  • I feel jealous of some 80 year olds who have more oomph than I do.

  • Oh indeed...me too!

    Virtual oomph whizzing over to you πŸ˜€πŸ˜€πŸ˜€

  • dear foggy me not spoken to you for a while so congratulations on the administrative position. you are very professional.hope all goes well at your end.As no doubt you have read about the elections here am expecting a great deal of flack one way and another the physicians here are almost being subjected to witch hunts in the prescribing line and I can,t see it getting any better writing on the 10 Nov.Gillian.

  • Hi foggyme, I got a printout of my bloods this afternoon (I asked them to check my B12 in June and they did a liver function test?! The last time my B12 was checked was 18 months ago and this was the results:

    B12: 522 ng/L (191-663)

    Serum folate: 7.0 ug/L (4.6-18.7)

    Any help with this ? :)

    Thank you

  • Hi JordanC. Well, eighteen months ago your B12 looks okay and your folate was a little on the low side. But these results are so old now and the position could have changed quite significantly.

    Could really do with repeating to see what the current status is.

    πŸ‘πŸ‘

  • "Wouldn't look at the notes and was pretty much horrible."

    "If she still refuses, the you could write to her"

    I think Foggyme's suggestion about writing is a good one as my understanding is that letters to GP have to be filed with medical records.

    Have you read the "BSCH cobalamin and Folate guidelines"? Outlines recommended treatment and diagnosis procedure for B12 deficiency in the UK. I gave a copy to my GPs plus a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which is up to date with UK guidelines.

    b-s-h.org.uk/guidelines/ click on "Diagnosis of B12 and Folate deficiency"

    Link about writing to GP about B12 issues. Doesn't seem to mention above guidelines which I would.

    b12deficiency.info/b12-writ...

    fbirder has compiled a useful summary of mainly UK B12 documents. Lots of quotes that I found helpful when dealing with medics who haven't done their homework on B12. Link to his summary on his profile page and in third pinned post.

    "Don't know what to do as my bloods come back normal "

    Have you got copies of all blood tests including B12, folate , ferritin and full blood count? I learnt to always get copies after being told everything was normal and then finding abnormal results on copies.

    Have you ever had an IFA (Intrinsic Factor Antibody ) test? this can help to diagnose PA but is not always reliable. People can have PA with a negative result (Antibody Negative PA is mentioned in the BCSH Cobalamin and Folate guidelines).

    UK b12 websites

    b12deficiency.info/

    b12d.org

    pernicious-anaemia-society....

    martynhooper.com/

  • Hi jcarleton you have my sympathy, I am from NI as well and have had a few problems as well with doctors. I honestly can not advise you as to what to do re changing it is a gamble, we should be able to have a meet with prospective GPs and ask them where they stand on certain issues, it would be so much easier, :) Wishing all the best with what ever you decide.

    Jane x

  • J πŸ€

  • Hi,

    Members of the PAS can access details of local PAS support groups. Don't think there is one in NI yet but perhaps there may be in future. Anyone interested in starting one can contact the PAS for support.

    pernicious-anaemia-society....

    pernicious-anaemia-society....

    I assume that PAS members from an area that does not have a local support group would be able to visit a support group in another area. Hopefully the PAS can tell you more if you are interested.

    PAS tel no +44 (0)1656 769 717

    I think getting together with others who have similar experiences is invaluable. When I spoke to others with similar problems I no longer felt so on my own.

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