advice please

[Imcn1960]

recently been advised that my B12 is normal and waiting to see a neurologist 23 weeks waiting list I was on injections until March and everything was fine I was told nhs was stopping B12 injections and I had to have tablets which didn’t work, I returned to the doctor to and got a one off injection in July and everything back to normal this has now run out and not on anything and symptoms have returned the doctor advised me that my levels are normal and therefore I shouldn’t need more B12 is this the norm

[wedgewood]

i am afraid that your doctor is displaying his ignorance of B12deficiency/pernicious Anaemia . Once treatment of P.A. or suspected P.A. has commenced , there is no need to test it . It must always be high .This is stated in the guide lines , who h one hopes all doctors should have read . as you do not benefit from oral B12 , you need your injection asap.

I have proven P.A.( positive IFAB test ) I could not manage on a once every 12 weeks injection. So I’m forced to self inject ( like most members of this forum) I told my doctor , resulting in my NHS injection being withdrawn.

If you have a diagnosis of P.A, ir makes it easy to argue your case, because , anyone with P.A. must have B12 injections FOR LIFE . It is difficult get a diagnosis for P.A. There is no 100% test to prove it , only a positive Intrinsic Factor antibody test , for which about 50 % of P.A. patients test negative !

Ask your doctor to refer to the guide lines ( New ones to be issued in January next year , but can already be consulted ) I wish you the best in getting the treatment that you desperately need .

[Imcn1960 in reply to wedgewood]

Thanks for your information it’s very much appreciated waiting for a response from the doctor fingers crossed if not I will need to look at how I can get injections privately as the difference is like night and day

[wedgewood in reply to Imcn1960]

You can also consider self -injections . It is quite cheap -no more than £2.00 for an injections

It’s relatively easy to get the B12 ampoules from excellent German Online pharmacies . After injecting I.M. for 9 years , I’ve found that injecting sub cutaneously with a 6mm needle is just as effective and less intimidating ! If you want information just let us know .

[Imcn1960 in reply to wedgewood]

Thanks for your reply I would be interested in more information about self injection feel that I keep getting the wrong information from my Gp

[Wwwdot in reply to Imcn1960]

Hi Imcn

Sorry to hear your plight and well done for joining us and asking for advice and help.

Wedgewood is quite right that self injection is the most feasible option regardless of what your GP may offer. They are unlikely to offer enough to get you approaching a 99% recovery - 70% if you are lucky (estimates for emphasis only and based on my experience not scientific evidence)!

I self inject every day (and I absolutely hate needles - I am a real needle phobe) but I manage that because I NEED and WANT my life back. Costs me about £1 a day for B12 and all the needle stuff - I buy B12 from Germany and the other stuff from UK.

It’s a tough decision but it is your decision and whatever you decide you have found unconditional support, a wealth of knowledge and guidance from this forum.

🤗🤗🤗🤗🤗

[Imcn1960 in reply to Wwwdot]

Thanks for your help and support much appreciated

[Imcn1960 in reply to wedgewood]

hi just wanted ask if the self injection kits come with the syringe and the B12 I've had a look on line just wasn't clear thanks Iain

[wedgewood in reply to Imcn1960]

I have never bought an actual kit . I buy the single use ampoules from German online pharmacies . ( B12 ampoules are a prescription only item in U.K. . but not in Germany . )

Needles , syringes etc obtainable in u.k.

I will send you a private message .

[Imcn1960 in reply to wedgewood]

that would be great thanks

[Doris11 in reply to wedgewood]

Hi there could you send me a private message too as I’m looking to source some B12ampoules for myself ♥️

[pinkpaddleboarder in reply to wedgewood]

I hope you do not mind me jumping on this thread. My daughter finds IM injections in her thighs painful, whereas I don't even feel them and I am slim and muscular.. I would like her to try sub cutaneous, and would like some advice. I currently use a blue 1 inch needle. Any helpful tips please?

[Imcn1960 in reply to pinkpaddleboarder]

hi thanks for the information do you have any information where to purchase a full self injection kit thanks Iain

[wedgewood in reply to pinkpaddleboarder]

I used to inject I.M , for 9 years . I now inject sub cutaneously with a 6 mm long needle . Yes it works . I get that needle from Amazon.co.u.k. ( can’t find it anywhere else ) Antonmove stainless steel pipe 30G x 6mm ( 100 for £16.99

You could also use a 30G x 1/2 inch needle from Medisave . Use the whole of the front of the thigh or the tummy fat .

[Hidden in reply to wedgewood]

Thanks, I can't find 6mm on amazon only 4mm. I use 1 inch in thigh muscle, is that too bit for stomach, I can look for half inch on medisave.

[wedgewood in reply to Hidden]

This is the 6mm needle on Amazon

A 1 inch needle is too long for a sub-cutaneous injection. A half inch is fine .

normal

[Imcn1960 in reply to wedgewood]

Thanks for the advice really appreciated

[pinkpaddleboarder in reply to wedgewood]

Hi, I received my needles from Amazon they appear to be 31g (not 30g), 6mm. However I tried my first SC and noticed that it takes longer to push through the liquid than doing it IM with larger needle. I guess that makes sense? I'm also left with a little bit in the tip, is that usual?

Photo of surplus B12 in 6mm needle

[wedgewood in reply to pinkpaddleboarder]

Yes there is a bit left in the tip. .That fine needle means that it is not easy to push out the liquid . It takes longer . But it makes it painless to push through the skin . The finer the needle the harder the resistance . You will have been injecting with a much coarser needle for I.M probably a 25G . That makes a big difference. You will get used to the new routine after a few times .

[Wwwdot in reply to pinkpaddleboarder]

Hi pinkpaddleboarder

I do SC as I find IM very painful. I use a 27 1/2 “ needle it’s a grey colour code.

🤗🤗🤗

[pinkpaddleboarder in reply to Wwwdot]

Thank you, are those needles from medisave? I currently have 30g 1 inch for IM.

[Wwwdot in reply to pinkpaddleboarder]

Yes I use medisave I get everything from the apart from the actual B12.

🤗🤗🤗

[pinkpaddleboarder in reply to Wwwdot]

I couldn't get those from medisave, currently out of stock so used 31g 6mm.. hope this was OK? Takes a while to push liquid through though. Definitely recommending SC to my daughter who doesn't like the thigh injection.

[Wwwdot in reply to pinkpaddleboarder]

Hi Pinkpaddleboarder

I inject while sitting comfortably in bed, and I inject as slowly as possible - my best yet is to take 30 seconds - there is no rush after all! Just take your time and breathe deeply whilst you do it! Then I wait around 30 seconds before I withdraw the needle. I call it my B12 tea ceremony - except I have a cup of coffee made by hubby! I then sit in bed and enjoy my coffee after I have done the deed and that is when I start my day. All psychological but it's how I cope!

You will find your coping ritual too!

Well done!

🤗🤗🤗🤗🤗

[charks]

Yet another GP who hasn't bothered to do any research on the subject but thinks he knows everything. Once you have had an injection you B12 levels will be very high and gradually come down. If you leave it long enough you will reach the magic B12 level that triggers your GP into action. But by then you will be a wreck.

My GP once told me my levels were dangerously high and to stop taking B12. Within 3 weeks I had a relapse. I started taking it again and now ignore everything my GP tells me about B12. I bet if I'd had my B12 level taken when I relapsed it would still have been 'dangerously high'. The fact is, for some reason, we need high levels of B12 to stay symptom free.

You need to take some action now. 23 weeks is too long to wait. And there is a strong chance the neurologist won't know any more about B12D than your GP and the appointment will be a waste of time.

I don't have any medical training but IMO you will need to treat yourself. Luckily there is all the information you need on this forum. I can't advise you because oral B12 works for me.

[Imcn1960 in reply to charks]

Thanks for your reply it very much appreciated I’ve been trying oral spray lately but not sure it’s working yet

[charks in reply to Imcn1960]

I tried sublingual B12. It didn't work for me. There is a theory that the B12 molecule is too big to get absorbed through mouth tissue/skin. And apparently most medicine taken sublingually ends up in the gut. I dilute the sublingual B12 in water instead and drink it throughout the day. It is passively absorbed in my gut. However the process is very inefficient - only about 1% of oral B12 supplement will make it into the blood. So you need to take lots.

[Imcn1960 in reply to charks]

Thanks for the information very helpful

[Litatamon in reply to charks]

Charks, how much do you personally take, with the sublingual?

[Helsan]

i have sent you a private message. There is a specialist B12 consultant in Cambridge £200 well spent on gp letter and self injection demo and information re B12 for life.

[Imcn1960 in reply to Helsan]

Thanks for the information much appreciated

[Suesue246 in reply to Helsan]

Hi Helsan. Would you be able to send me the details of the specialist too? Thank you

[Helsan]

of course will do it now

[Wwwdot in reply to Helsan]

Well done Helsan - he is my and hubby’s hero too!

[Litatamon]

So frustrating to hear about yet another doctor that has no clue. And like another said on here do not think the neurologist will necessarily know more. Mine told those shadowing him 'She needs to eat more meat'.

Here are some informative and concise links on common misconceptions and why there is no need to test during treatment. All contain medical footnotes -

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

All the best to you.

[mom2kdg]

Once you are diagnosed I didn’t think they were suppose to retest B12 as the test would be skewed by the B12 injection. Wishing you the best.

[Pollyanna23]

Hi. My b12was stopped during the Covid pandemic and I was put on tablets instead for my b12 of which did not work.I am finally back to my b12 injections in fact I had one yesterday. I actually had a upset tummy today which is unusual and I wonder is it anything to do with the b12 injection.I have worked in the care sector and I understood once you are on b12 injections that you remain on them for life.You need to get the levels of b12 in your body checked cos although your levels are normal at present surely there should be regular checks to make sure they stay normal.