B12 injections

[Annab124]

I’m really stressed . I’ve been having b12 injections for around 2 years now . When I was tested I was told that my b12 levels were really low. Due to covid -19 the doctors are not offering b12 injections . I’m concerned with how this is going to effect me as I have seen on the Internet it can cause nerve damage to not have them

[Nackapan]

Look through the posts

Write to your Gp.

Its happened to alot of people

[Sleepybunny]

Hi,

I've assumed you're in UK.

Have you considered challenging the GP's decision?

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.

I wrote another very detailed reply on another forum thread with links to 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 also find helpful.

healthunlocked.com/pasoc/po...

B12 article from Mayo Clinic (US)

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

Warning

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

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

Blog post about Treatment of B12 deficiency in Gloucestershire (April 2020)

b12deficiency.info/blog/202...

PAS blog post about oral B12 treatment (August 2016)

martynhooper.com/2016/08/02...

2) There is pressure on GP surgeries to cut costs...I think some GP surgeries see patients treated with b12 injections as an easy target.

Have a look at the comments under this recent BMJ article about PA (Pernicious Anaemia)

bmj.com/content/369/bmj.m13...

Some of the responses below the article from GPs are very concerning. See response published on 24th April. Attitude of GPs seems very questionable to me.

Costs £30 to get access to original article. There was a recent thread about this article on the forum.

PAS

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.

B12 Deficiency Info website

b12deficiency.info/

If you want to challenge GP's decision, 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. Should be useful info in the links I included in this post.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

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.

B12d.org are holding some online meetings during pandemic.

b12d.org/event

I am not medically trained.

[Gambit62 Administrator]

Suggest that you contact your GP and ask them to follow this guidance provided by the BCSH for treatment during the pandemic

b-s-h.org.uk/media/18259/bs...

I am not sure what the latest advice is from the RCP. The last version I saw was before the above was issued so I am not sure if it has been updated.

You can try high dose oral tablets - 1000mcg plus (you can take several a day), or try using a sublingal spray as an alternative to injections - but about 1/3 of people don't find they work for them - though at least one person has posted on the forum in the last couple of weeks to say that they preferred them.

[Marz]

Lots of good advice from the very experienced people here on this Forum. Looking through your previous posts I see you suffer with Fibromyalgia - hence I am wondering if you have results of other important nutrients like VitD - Ferritin and Folate. All need to be optimal - and Folate/Folic Acid/B9 works with the B12 in the body in an important way so should be tested. VitD is an anti-inflammatory non-steroidal pro-hormone. - so much much more than a vitamin.

Do you always keep copies of your results with ranges - so you can monitor your health progress and also check what has been missed ! You are legally entitled to have copies of your test results and do not have to give a reason. Also many surgeries now have on-line access to your records - so worth checking ...

I was diagnosed with Fibromyalgia back in 2000 and then Hashimotos in 2005. Since correctly and optimally treating the thyroid, my Fibro symptoms have ebbed away. Fibro can be linked to Low T3 - the most important thyroid hormone - and yet rarely tested in the NHS - sigh ! Testing the TSH is not enough as it is not a thyroid hormone and if the T4 is tested - then that is a storage hormone and needs to convert into the Active T3 needed in every cell of your body.

Low B12 is linked with Low Thyroid and there are many crossover symptoms. Hashimotos or auto-immune thyroid is very common and affects the uptake of vital nutrients from food. Many of us here are on Thyroid UK as well as this Forum - have a read and see what you think ...

thyroiduk.org

[grahamrw1953]

Hi,

U need meth b12,

30% of population have a gene, which won't allow b12 to be turned to meth b12 ,

So take meth b12 tabs, local chemist

Graham