Desperate & scared

Hi, I have had PA since 1992, it was discovered during one of my pregnancies at the hospital. The Consultant I was under (a professor) he told my Dr i needed B12 monthly for life. I have recently moved area and now my new surgery says they only give them 3monthly! I have tried to buy it online but no luck there. I live in B,Ham England. Does anyone know please where/how I can purchase my medication from? I'm on Cycoxycoblamin (no doubt spelt wrong)

Many thanks.

22 Replies

oldestnewest
  • Generally in the UK treatment for B12D is hydroxocobalamin. Some research in the 1960s showed that on average this form of B12 is retained longer than cyanocobalamin by people and overtime the result has been to move from monthly shots to 3 monthly shots.

    You won't be able to get hold of injectible hydroxocobalamin (or cyanocobalamin) in the UK because of the prescription only rules that apply to anything in an injectible form. You can source it from outside the UK ... though most of europe uses hydroxocobalamin so people will be sourcing hydroxocobalamin, eg from Germany, where it is available over the counter in pharmacies.

    Have you checked with the new surgery what form of cobalamin (B12) they actually use? just to be sure that they aren't talking about hydroxocobalamin. If they are using cyanocobalamin then it should be monthly not 3 monthly.

    Even though on average people retain hydroxo for longer than cyano there is a huge amount of variation and some people will actually retain cyano longer than hydroxo. Significant numbers of people struggle with 3 monthly on hydroxo so if your concern is because you are experiencing symptoms returning well before 3 months then you wouldn't be alone, but if you haven't had that experience, or haven't had it yet then try the 3 monthly hydroxo and see how you get on.

    There are alternatives to sourcing injectible B12 - including sublingual tablets, sprays, nasal sprays and skin patches - these do work for some people and might help you.

  • The British National Formulary quotes:

    Note

    The BP directs that when vitamin B12 injection is prescribed or demanded hydroxocobalamin injection shall be dispensed or supplied.

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

    The symbols used denote a) none of the cyanocobalamin products mentioned may be prescribed on the NHS; b) cyanocobalamin is "considered by the Joint Formulary Committee to be less suitable for prescribing".

    Hence:

    If it on the NHS, it will be hydroxocobalamin. Though I do not know when the changeover occurred.

  • true that the treatment should be hydroxocobalamin and that has been the case for a considerable length of time but there have been a few people, based in the UK who have reported being treated with cyano over the last year.

    Also, as ever, this is realated to treatment of megaloblastic anaemia so if that wasn't present - which could be case if it was picked up during pregnancy - then ... Just another example of how confusing and confused the guidelines on treating PA/B12D are.

  • With my "home" over in the Thyroid UK forum here, I frequently try to decide whether B12 or Thyroid have the worse guidelines, statements, etc. (No formal NICE guidelines at all for hypothyroid - only inherited CKS.)

  • I can imagine. Thyroid seems to be a particularly complex thing to dignose properly as there also seems to be grey areas but guidance generally doesn't mention that.

    Frustrating that even though you can point to things in the guidance that is wrong or misleading there is a reluctance to do anything about rewriting and updating.

  • I am so sorry, please accept my apology, my medication is Hydroxocobalamin. Had previously been reading about cyanocoblamin and becaome confused.

    Regards.

  • Absolutely NO apology required. This issue is confusing and many do not know what they are being given.

    I was trying to ensure clarity - including for future readers. :-)

  • Thank you. x

  • No need to apologise - it's all very difficult when you are tyring to think through the fog of B12.

    If you have had neurological symptoms then the treatment would be once every 2 months according to the NICE guidelines and there is also mention in the guidance of B12 only being licenced for 2 months which can tend to cloud things rather and makes it more difficult.

    Hope that you manage to find a solution that works.

  • Try looking at b-amazing.mysimplestore.com

    They are UK based and seem to be gaining some traction.

  • Thank you I will take a look. x

  • Has anyone actually used this company and can vouch for them?

  • Good question! x

  • Yes I would want to know a bit more and get some personal recommendations

  • BEWARE of this site - it turns out many people have been scammed !

  • Yes there is another thread on b amazing. Some posters reported that they did not receive anything after 6 weeks and are trying to get their money back. Very stressful for them. It is always best to get lots of personal recommendations. Easy in retrospect.

    healthunlocked.com/pasoc/po...

  • As you already know Miniskirt, if you have already been diagnosed with PA, treatment with regular injections is for life, as stated in BCSH guidelines, and it is appalling that your new GP is ignoring expert advice. Have you tried writing to the surgery or asking for another GP at the same surgery? This site has information and advice on writing with useful templates:

    b12deficiency.info/b12-writ...

    My sister tried three different doctors at the same surgery before an Indian doctor there agreed to do monthly injections for her severe neurological symptoms. Indian doctors like UK expert, Dr Chandy, are often more familiar with B12 def. as many Hindus have symptoms on vegetarian or vegan diets.

    If it is not possible to change your GP, you could write or email this latest BMJ research document, which also gives up to date guidance on treatment *** It might be worth taking someone with you for support at your next appointment, together with this summary (in case they do not read the complete document) to underline the seriousness of not treating PA with frequent injections.

    cmim.org/pdf2014/funcion.ph...

    Cmim/BMJ document. " Summary:

    * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

    * There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

    It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given."

    "If there are neurological disturbances, then treatment should be expedited and started without delay - 1,000 u.g. i.m. on alternate days. This should be continued for up to three weeks or until there are no further improvements.

    ***In irreversible cases, e.g. P.A., the treatment should be continued for life. "

    I hope all goes well for you

  • Hi I'm 43 and have has pa since about 9years old think through having twisted bowel with gangerine removed at the age ov four . this has always bin normal to me and I remember suffering extreme tics to pulling eyelashes out ,jaw movement ,making clicking noises,which I thought was through bein nervous ,iv had tingles in hands sudden breathing and anxiety issues,iv always been chatty and rush alot .my daughters pycolagist told me I'm filled with it .This is when I searched and discovered this is a link to pa as iv never asked about it ,I told my doctor what he thought and checked my b12 and he said its double what it's ment be .My anxiety is awlful because I'm aware ov my behaviour eg tics and hyper I wish I new if iv bin damaged as a child through delay .I'm writing this and now even I'm doing facial movements and tics so scared hes not listening as lack of knowledge .Feel stupid I'd not had levels check for ten years ,iv put up with this for years thinking my symptoms are from every illness from tourettes,raynards,and kept going to the opticions ,through constant eye tics sorry for it being so long just want be on more b12 that, the 3mnth period I have now x

  • I'm so sorry Leigh, I have only just seen this as just moved house!

    I'm shocked that nobody has followed up on your treatment after your operation at four years old!

    It is essential that your GP is made aware of all your symptoms (good idea to write them down) and the latest BMJ research document and BCSH guidelines under 'Poor absorption due to gastrointestinal surgery or disease' (bottom of page 10) states, "Patients who have had barbaric surgery should have their cobalamin levels status monitored and are likely to need cobalamin supplementation via a route depending upon the type of surgery (Grade1B)."

    Re. blood test results, the latest BMJ research document (already given above) has a useful summary. The Serum B12 blood test only shows levels in the blood and not whether B12 is being absorbed into your tissues, It also gives GP information (bottom of page 4 under, "How is response to treatment assessed") :

    "Cobalamin and transcobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment and retesting is not usually required".

    In other words, once b12 treatment is started, the serum blood test results are not reflective of how effective the treatment is. It is the clinical condition of the patient that is important.....

    Would you be able to take someone with you for support in emphasising to your GP the seriousness of this deficiency and necessity of treating urgently and adequately with B12 injections ?

    Very best wishes and I hope all starts to get better for you.

  • Hi,

    This below listed (links) is what most people here use, to add B12 to what they get from their GPs, and where they get their supplies, you can buy most forms of injectable B12 in most EU countries at pharmacies with out a prescription, just not in UK and Holland. Also OTC in Australia, most of South America etc.

    Injectable B12.

    goldpharma.com/article/1/ Search for 'hydroxocobalamin' and select: B 12 depot-rotexmedica 10 amp. (10x1ml)

    mycare.de/ Search for 'hydroxocobalamin' and select: B12 DEPOT ROTEXMEDICA (10x1ml)

    oxfordbiosciences.com/vitam... methylcobalamin, one has to mix it with saline solution the info is on their resources page (go to bottom of page) oxfordbiosciences.com/resou...

    arnika-apo.de/ they sell methylcobalamin but its not visible on their website, you have to contact them, they speak english :

    Tel.: 089 / 613 809 58

    Fax: 089 / 613 809 59

    Das Telefon ist an Werktagen Montag bis Freitag von 8:00 Uhr bis 17:00 Uhr besetzt.

    E-Mail: service@arnika-apo.de

    Syringes and sharp boxes:

    medisupplies.co.uk/

    medisave.co.uk/consumables-...

    I inject IM (in a muscle), I inject prescribed NHS hydroxocobalamin, and selfbought cyanocobalamin, I find the B12 ampoules with 2 ml hurts/ stings less because it's half the concentration. B12 is thick stuff and the stinging is the fluid pushing apart the muscle fibres, so diluted its les thick and you inject slower, also 2ml is easier to suck up in syringe I find, if you leave some its not to much wasted... But we all are different. I prefer cyanocobalamin, it does not sting, but needs to be used more often.

    I've never used methylcobalamin so can not comment.

    For pain free IM injections:

    Warm up the ampoule of B12 to body temp

    Relax the muscle, give it a good hake

    Inject slowly, if you feel it hurts start again is what I do.

    I do not stab, I go slowly and on your leg you can find areas that have bareley any nerves, its only the prick trough the skin I feel then. Also having the eye of the needle facing you makes it easier to go in, why I do not know. I inject after a hot bath so my skin is soft.

    Some more in here:

    IM:

    faculty.ksu.edu.sa/gemeay/s...

    Sub cut:

    cc.nih.gov/ccc/patient_educ...

    If you go to the old PAS forum you will find numerous posts in the diagnosis and treatment section about self injecting, in the living with PA section there is a topic called tips for more comfortable B12 injections, see:

    pernicious-anaemia-society....

    I hope the above all help you,

    Kind regards,

    Marre..

    All in this topic:

    healthunlocked.com/pasoc/po...

  • I cannot thank you enough my friend. I will check them out. KIndest regards. x

  • I tried b-amazing a few months ago waited 6 weeks various emails promising delivery, never arrived, got my money back through PayPal. Can only assume their some kind of weird con? Seemed really genuine in the emails so it was very upsetting to find out they weren't. I see their website is no longer up. I actually bought on eBay same people as they advertised so I left neg feedback to warn any others. still confused about their motives, so strange...

    I have got a vial from the Dr chandry charity, and have just bought one Batch from OxfordBiosciences, water vials from somewhere else, Google "water for injections" and it will come up for a UK company that supplies water vials, needles and handly needle safe disposal units which are great. I'm a needle phone so only manage sub cutaneous injections with an adapter Palcolabs to help me self inject, can't see the needle it helps a lot.

You may also like...