B12 injections stopped

[Sunny999]

My surgery have changed b12 injections to Cyanocobalamin tablets. They say that some people find it better. They will do a blood test in 3 months, is this because it is cheaper? Thought it wasn't helpful for PA. I don't pay for my prescriptions so that is not an issue.

[Nackapan]

It isnt if you have PA or absorbtion problems.

Write to your Gp ask to self inject ? Ask for your injections as you need them. Give them your symp

toms.

I was prescribed 50mcg tablets a while back. They did nothing. 500mcg dies nothing

The advice if desperate is to try 1000mcg

What were you prescribed. ?

If you are willing to do self injections yiy may as well ask for a prescription if you dont pay.

I have bought some.

Also have some on prescription but pay for those.

'Free ' at the surgery.

I'm just happy to keep Injections .

If you look through posts it happens g because of the pandemic.

But that said tiu need your treatment.

[Miss-guineapig in reply to Nackapan]

I self inject by GP doesn't know and also get a prescription from GP as well as buying from Germany. In addition, I have always taken 1000 mcg x 2 Vit B12 tablets, not sure how much is absorbs but I feel good at the moment. I have also bought a sublingual spray to try if brain fog or lethargy is bad at work. Just sharing incase it helps anyone x

[Nackapan in reply to Miss-guineapig]

Thankyou. I will continue to take the tablets I've got daily. 500mcg b12

Akso I alternate multivitamin ad chooses ones lowest in folic acid as absorb that from food. They all have a little b12 ans iron.

Alsi on ferrous fumerate every other day. Solgar and spartane on other day on gp instruction. (Well they say can take 2 ferrous fumerate a day) but cant tolerate that.

Bloods due soon to see if ferritin stable.

I'm on b12 sc one prescription 1 german ( bought ) then I'm at the surgery at present. (Officially 2 weekly. )

So glad you have picked up and feeling well.

Are your tablets cynocobalamin ?

Take care and enjoy the BH

And everyone else

[Nackapan in reply to Miss-guineapig]

What frequency of injections suit you?

If you dont mind saying .

[Miss-guineapig in reply to Nackapan]

Every 4 weeks, plus my 2x 1000mcg VitB12 tablets every day, 5mg folic acid every second day and D3 every day x

[Nackapan in reply to Miss-guineapig]

Thank you.

Forgot I take d3 every day too.

Glad its working for you.

[Sunny999 in reply to Nackapan]

Thank you for your reply.

[Sleepybunny]

Hi,

"They say that some people find it better"

I think it's more likely that your GP surgery finds it cheaper...

Nurses' time to give injections is expensive.

I also think your surgery is trying to reduce the number of appointments so there is less contact between patients and staff due to concerns about Covid virus.

Have you considered challenging their decision to change to oral tablets?

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 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/

I am not medically trained.

[Sunny999 in reply to Sleepybunny]

Thank you for reply, I am in Gloucestershire so that must be why.

[Sleepybunny in reply to Sunny999]

Are you a PAS member?

PAS members can access details of support groups.

pernicious-anaemia-society....

There is a PAS support group in Gloucestershire. It's not meeting during pandemic but you might be able to speak to someone.

There have been several forum members from Gloucestershire who have reported difficulties.

Have you thought about contacting your MP?

Gloucestershire's treatment pathway goes against advice in BNF (British National Formulary) and other national guidelines.

Don't let them fob you off with oral tablets if you need injections.

Personally I have not met anyone with non- dietary B12 deficiency who is okay just on oral tablets.

In UK, national guidelines only recommend oral tablets for dietary deficiency.

If you have PA or another condition that affects B12 absorption in the gut then UK recommended treatment is B12 injections.

There are temporary guidelines on B12 treatment for the pandemic based on BSH guidance.

Your GPs may find it helpful to read this PAS article about the latest BSH advice

pernicious-anaemia-society....

There's a good chance that they are not aware of what it says.

There can be severe consequences if under treated for B12 deficiency including the possibility of permanent damage to the spine.

pernicious-anaemia-society....

Writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

There's a lot more B12 info in the links in my other post which I suggest you spend a few days looking through.

If I had to sum up for people in Gloucestershire with b12 deficiency who want good treatment in one word, it would be "move" (although I realise that's not possible at moment).

To be fair, I am sure there are kind caring GPs who understand B12 deficiency in Gloucestershire but sadly they are going to be constrained by the treatment pathway imposed on them.

GPs are allowed to prescribe off license if they feel it is in the patient's best interests.

gmc-uk.org/ethical-guidance...

[Sunny999 in reply to Sleepybunny]

Thank you so much for all the information and time. Can't see that they will save much money doing this. Think I will talk to my surgery in the first instance.

Best wishes

[Sleepybunny in reply to Sunny999]

Hi,

Good luck.

Nurses time to give injections is expensive...the B12 ampoules for injection are cheap, about £1 per ampoule.

I am sure that Gloucestershire's decision to move to mainly oral tablets is influenced by cost.

From personal experience, I feel that writing letters to GP can be more effective than talking.

1) Letters allow patients time to state the issues clearly

2) Letters provide a paper trail, useful in case there is a need for complaint in the future

3) In UK, letters to GPs are supposed to be filed with patient's medical notes so therefore are harder to ignore than info passed on verbally.

[Bonjourtristesse]

I have 5000mg tablets sublingual from Solgar. I am taking two at a time and they seem to be doing something as I am getting pins and needles which I had after injections initially and I believe is nerves repairing. I am not diagnosed with PA though. And I found the injections worked better for fatigue, perhaps the tablets work but at higher doses? Someone else has been prescribed 1000mg tablets on here so much less than what I’ve been taking.