No b12 available

[Claire1966]

I get my b12 jab every 10 wks. I spoke to the nurse last friday and the drs have decided not to do these for the nxt few months. They say the body can store it for upto 6 months! Is this true? If so why am I so desperate for my b12 even wks before it's due?

[wedgewood]

If you have Pernicious Anaemia, you CANNOT store it , but as we a.l know it is difficult to get a diagnosis , as the test is 50% inaccurate if it comes up negative . If you don’t have P.A. and you eat animal products , you can store B12 for much longer than 6 months, unless you have other issues . I cannot imagine where your doctor gets his/ her information from .

In these very difficult times , you need to do what many of us have to do and self - inject B12 . You can then find out exactly when you need to inject . We are all different and need B12 at different intervals . I inject once a week to keep well . It’s important to keep well at this time to keep our immune system in good order .

[19191919 in reply to wedgewood]

I am vegan I am seriously thinking of self injecting.

[fbirder in reply to 19191919]

If I were vegan I'd definitely try some high-dose oral B12.

[wedgewood in reply to 19191919]

You shouldn’t actually need to inject if you are vegan , because you should be able to absorb B12 in tablet firm. Unless of course you have Pernicious Anaemia . Also many food items have B12 added . You need to read the labels . Many cereals have b12 added . Best wishes .

[19191919 in reply to wedgewood]

I do have pernicious anaemia and usually a 3 monthly injection

[Gaudygoat in reply to 19191919]

One word of warning. If your B12 is low because of your diet then some standard B12 tablets from H&B should give you a boost but if you are possibly low due to PA, then taking supplements can mess up your B12 count if you go to the doctors. Normally I'd say get checked out before taking B12 but of course at the moment you can't. Check what you are eating...if you are getting B12 and still feeling bad then maybe you have PA. If that's the case you will need injections but it is recommended that the first ones are administered by medical staff in case you suffer an allergic reaction.

In current times, though, fbirder's suggestion of high dose oral tablets is probably the best course until you feel better or the lockdown ends and you can see the doctor.

[19191919 in reply to Gaudygoat]

Thank you x

[Sleepybunny]

Hi,

Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.

From PAS website

pernicious-anaemia-society....

There are lots of comments under the posts as well.

From B12 Deficiency Info website

b12deficiency.info/blog/202...

Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.

b12deficiency.info/blog/202...

Many on forum source their own supplies and self inject. My personal feeling is that this is a last resort but many are being forced by current circumstances to consider this.

Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods.

If you are unhappy with what has happened, might be worth putting concerns in a letter to GP. You could include info from two links at top of this post.

You could also refer to information that suggests going without injections for a long period could lead to permanent neurological damage.

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

Symptoms Diary

Do you keep a daily symptoms diary? This can track changes in symptoms and when treatment received. Can be useful evidence of improvement or deterioration in symptoms.

PAS (Pernicious Anaemia Society) membership

Are you a PAS member? They have a helpline that their members can ring; there may be interruption to this helpline during pandemic.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

PAS members can access contact details of support group co-ordinators. Support meetings have been cancelled during pandemic.

PAS website has library section with useful articles/leaflets including "Treatment is for Life".

You need to be a PAS member to access most of the articles/leaflets.

I wrote a detailed reply on another forum thread with links to B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

I am not medically trained.

[Gambit62 Administrator]

suggest you write to your GP and share this information from the PAS website

pernicious-anaemia-society....

pernicious-anaemia-society....

Please note that the PAS server would appear to be down at the moment so you may not be able to get to the articles at the moment

[19191919]

My pharmacist said some tablets get through so I am going to do this. Mine is due end of April. Maybe things will improve before them. Can your surgery give virtual demonstrations of self injection and give you the stuff. They are being creative at this time. Good luck. Susan.

[EMargaret]

I have ordered b12 they are sublingual

[MariLiz]

I have written a letter to my GP, MP, and to the CCG in my area, explaining how very worried I am that these injections are being stopped. I was so very unwell before I was diagnosed, and couldn’t fight off any infections.

Not sure how much good it will do, but I’ve asked for them to write me a prescription for the B12?

I have also bought two sublingual sprays, which I have used in the past, as a top up between injections. Quite how long they will be needing to top me up for I really don’t know?

[Gaudygoat]

I was getting injections every 8 weeks but that wasn't enough so I no self-inject weekly. Some people seem to manage fine on 3 monthly injections and I suspect some of them could go longer without major problems but I know some people are having to inject daily or even more. Prior to SI, I tried a number of interim measures...nasal sprays, sublingual tablets, sublingual sprays and the only thing I personally found to have any affect at all was the BetterYou B12 boost that H&B sell. Other people have had better success with other methods so I think this may be a personal thing but you will need a high dose (1000ug or more) as the body only absorbs about 1% without intrinsic factor.