B12 substitute

[Allyma]

It's been nearly 2 months now I was due my b12 injection totally exhausted is not the word however I did find some sort of solution the b12 tablets don't work for me but I found a b12 spray which costs £10 and its better than nothing I ordered it from boots it's called vitzspritz. Hope this helps and hopefully we will all get our injections soon x

[Xena2202]

Is it a nasal spray or for sublingual? That could be worth trying out, however surely not as good as injections. That’s why I self inject, something happens and they take away your shots, it’s not preferable. 2 months is a long time! Hope you can get relief soon.

[Allyma in reply to Xena2202]

Hi have injection every 3 months I've tried to speak to my Gp but can't get by the reception they just tell me the same thing every time I call no injections until further notice the spray it not a miracle cure but its better than nothing I have headaches everyday no energy it's a nightmare.

[Xena2202 in reply to Allyma]

You could ask them to prescribe a self injection for you, that way they don’t have to give you a shot but you still get the treatment you need. If not many on here buy b12 online and self inject, it can be done subcutaneously and is very easy. In the uk you can order from reliable German pharmacies. I’ll copy a list that Wedgewood posted earlier.

bodfeld-apotheke.de Have a drop—down list of languages top right .

versandapo.de In German ,so use Google Chrome , or get a translation app.

mycare.de —————— This pharmacy has a site in English ,but only shipping to Germany during the pandemic

amazon.de Has a site in English . Disadvantage here is that you will have to trawl through the various online pharmacies that sell with amazon.de , because not all ship to U.K. .

You can pay with PayPal , Amazonpay or credit/debit card .

Needles , syringes , swabs , and yellow sharps disposal box can be obtained from medisave.co.uk. . You need to decide whether you want to inject I.M. into a muscle ( middle outer third of the thigh ) or sub-cutaneously ( sub-cut) into the tummy . This will dictate which needles to order

[Allyma in reply to Xena2202]

Thanks I'll look into that x

[Roses46 in reply to Xena2202]

I have my injections in my upper arm so I'm confused by the discussions ref self injecting. Are the tummy and thigh the only way if you self inject? Re not getting the jabs, have you explained to the receptionist that you are having symptoms? This is the only reason I got mine re-instated, though I've another hurdle to get over re the frequency. May be worth writing to your GP if you've already tried that?

[Allyma in reply to Roses46]

Hi yes I've explained they don't seem to bothered one receptionist told me if they cancelled cancer treatment what chance do you have of getting your b12 I have the injections in my upper arm too. The fatigue is terrible I'm totally exhausted the headaches everyday explained all this but no one Is interested I'm going to phone back today I've had enough now.

[Roses46 in reply to Allyma]

Agree with everything everyone else has put - ive realised actually that it may be because I explained my issues are non-dietary that mine were reinstated but definitely put a letter in x

[Xena2202 in reply to Roses46]

Yes upper arm (Deltoid) can be used for IM injection as well, but a max of 1mL fluid. Depends on preference. I prefer this myself but usually use subcutaneous, which can be done in abdomen, outer middle thigh, or outer upper arm.

This page shows info for both types of injection into the arm

immunize.org/catg.d/p2020a.pdf

[Bunbun123 in reply to Roses46]

Hi! I’m on the US. I do self inject on my upper arm on the deltoid. I read that if you self unject it had to be on tummy or thigh but personally I have no problem self injecting on my upper arm.

[Bellabab in reply to Xena2202]

bodfeld-apotheke.de/

Have a drop down menu at top right where you can select language = English. Register as a customer and ensure you fill in payment method. I find PayPals best. The ampoules I have received by DHL recently have expiry dates of late 2022.

Order and despatch confirmation was acknowledged by email. Delivery was 4 days.

[fbirder in reply to Allyma]

Bypass the receptionist. Write directly to your GP. Include a copy of the latest BSH guidelines - b-s-h.org.uk/media/18259/bs... Ask why your requiments haven been discussed individually. You may want to explain that you've not been allowed to speak to the GP because of the receptionist, depending on how deep in the doo-doo you want to put them.

cc: the practice head, your MP, and the local press, radio and TV.

[Allyma in reply to fbirder]

Thank you

[Singoutloud in reply to Allyma]

Does your surgery have a website? If yes, it should also have a complaints procedure. If not phone the practice and tell the receptionist you want to make a complaint and want the email address of the practice manager. That will at least get you past the receptionist. They are not qualified to decide if you need treatment

The guidelines for injections changed due to Covid but you should still be able to get treatment if you have non dietary B12 deficiency. Have a look at this from the PAS which includes the new guidance update

pernicious-anaemia-society....

[Allyma in reply to Singoutloud]

Going to try again today

[Singoutloud in reply to Allyma]

Good luck

If you scroll down on the link I added , it shows the updated guidelines for Covid from the BSH. You can forward that by email to your surgery as well

[Allyma in reply to Singoutloud]

Thanks I'm reading it now fingers crossed x

[Nackapan]

Is the spray helping you?

Have you written to your gp?

Sounds just awful

Write down whars happening tk youd doctor. It has to go on your notes.

How often do you normally have injections?

[Allyma in reply to Nackapan]

It helps a bit it's better than nothing I have injection every 3 months xx

[fbirder]

If that spray works I'm amazed the tablets didn't. The spray is only 10 mcg.

[Allyma in reply to fbirder]

It does not give you a massive boost you take two sprays under your tounge each morning and it helps me better than the tablets

[Allyma in reply to fbirder]

It gets into your system quicker

[fbirder in reply to Allyma]

No. B12 cannot be absorbed sublingually. The molecule is too big and too hydrophilic.

Studies comparing oral B12 and sublingual B12 show that about 1% is absorbed from both. Which means that it is onluy absorbed from the gut.

[Hidden]

I purchased a mouth spray from Holland and Barrett, it had good reviews but now self inject.

[fbirder in reply to Hidden]

Unfortunately all these things have good reviews. People are loath to admit that they've wasted £10 on something that does nothing.

Just read these reviews from people who have spent £45 on 18 patches. Patches which have been proven in studies to do absolutely nothing at all. smile.amazon.co.uk/product-...

[Linny17]

Hi, at the beginning of lick down I was 5 weeks away from needing my injection, so I called my surgery to make an appointment, I always book 5 weeks in advance, they told they couldn't make the appointment, but, would call me back nearer the time.

Which the duly did, the week my injection was due, I went in and got my injection.

I am now again 5 weeks away from injection time, I've spoken to the nurse and again, can't make the appointment, but told to call back the week before it's due.

My surgery are and have always been fantadtic.

I don't understand why some practices are refusing to continue with usual appointments.

Maybe call your surgery again and ask for the nurse to call you back...

[Allyma in reply to Linny17]

I've just phoned same as usual but this time doctor is phoning me back tomorrow to talk about putting me on cyanocobalamin until injections return I was on them years ago before injections but we will wait to see what he says.

[fbirder in reply to Allyma]

Insist on the injections.

Unless you are vegan or vegetarian then your B12 deficiency is not dietary.

If it is not dietary then it is most likely due to PA.

If your doctor tells you that you do not have PA, ask them how they know.

If they say it's because you had a negative result for IF antibodies remind them that half of all people with PA test negative according to the BCSH (British Committee on Standards in Haematology).

[Twaddletop]

If you are in the UK, and have PA then you are entitled to your injections.

[Allyma in reply to Twaddletop]

They are like a broken record b12 are suspended until further notice some of them think they are doctors I'll wait and see what he says when he phones tomorrow.

[Twaddletop in reply to Allyma]

I had to fight for mine but I quoted the latest guidelines. Also, I asked to speak with the practice manager as the receptionists had been warned to just drone on the response you’ve been receiving. Strange thing was, when the doc. called be back with an appointment, she refused to come out to the car park. I had to go into the health centre as normal. Weird !! Get fighting and good luck xx

[Allyma in reply to Twaddletop]

It's normally the health centre I go to aswell as that's where my surgery sends us don't know why we can't get it done in my surgery.

[Twaddletop in reply to Allyma]

It’s because their sticking to the rules first issued during the Covid crisis which have now been superseded. The receptionists continually fobbed me off, so that’s why I went for the practice manager. Look at the PAS site, all the info you need us there. Good luck with it. I am not by nature a fighter but they left me no choice. I could not sleep for pins and needles in my extremities. I have other health issues that were also being affected.

[MaryMary]

My surgery had a drive though for injections and blood tests but we can now go in under strict controls. I would say your surgery must try harder! Good luck 😉

[ampslave]

This is disgusting. I was told my injections were on hold. I rang the doctors and told them that my symptoms had got worse, they apologised and told me that my injections who or not have been stopped! I went back n the next day and began my injections again. The difference in service is unacceptable. Hope you get sorted.

[Sleepybunny]

Hi,

I'm sorry to read you are not getting the treatment you need.

b12deficiency.info/blog/202...

Have you considered joining PAS (Pernicious Anaemia Society) ?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

PAS website has section with useful leaflets eg "Treatment is for life" that PAS members can print out for themselves and for GPs.

pernicious-anaemia-society....

B12d.org has some online meetings during pandemic.

b12d.org/event

B12 Deficiency Info website has a lot of helpful info.

b12deficiency.info/

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of b12 deficiency with neurological symptoms.

Do you have any neurological symptoms?

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs

Your local MP or representative of devolved administration in Scotland, Wales, NI should be interested in your story if you are struggling to get appropriate treatment.

I left a long reply in this next thread with info on impact of pandemic on B12 treatment in UK.

healthunlocked.com/pasoc/po.....

It includes links to recent PAS news items and blog posts from B12 Deficiency Info which have suggestions on how to cope if injections stopped/delayed/swapped for oral tablets.

Warning

I believe that many UK patients who have been on B12 injections may find it difficult to get them reinstated even after pandemic is over.

There are moves afoot in some areas of UK eg Gloucestershire to move patients permanently to oral tablets.

b12deficiency.info/blog/202...

Challenging GPs

If you want to challenge GPs decision to delay treatment, I suggest putting queries about treatment into a brief as possible, polite letter to GP.

Try to include extracts from UK guidelines etc that support your arguments.

In UK, I feel letters to GP are more likely to be more effective as they are meant to be filed with your medical notes so are a record of issues raised. Useful to have a paper trail in case there is a need for complaint in the future.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

cks.nice.org.uk/anaemia-b12...

Should be other useful info in the links to other threads I included in this post.

BSH (British Society of Haematology) has produced guidance for GPs to use during pandemic.

See next link to most recent PAS news item about this.

pernicious-anaemia-society....

Check that your GP surgery is using the latest BSH guidance in link above. They could be using out of date BSH guidance.

You could ask for a copy of the guidance they are using.

You could draw GPs attention in any letter/phone call to the potential for permanent neurological damage if you are under treated. You could also write or ask to speak to practice manager.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

B12 article from Mayo Clinic

ncbi.nlm.nih.gov/pmc/articl...

Suggests

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3) Successful treatment should not be stopped

I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, B12 books, B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

GPs can find it hard to cope with assertive patients who ask questions and relationship between patient and GP can become strained. Weigh this up against the potential consequences of long term under treatment.

Symptoms Diary

Do you keep a daily symptoms diary where you record symptoms and the treatment you are given?

This can be useful evidence of deterioration or improvement in symptoms to show to your GP.

I am not medically trained.